{"id":17406,"date":"2022-12-13T10:57:33","date_gmt":"2022-12-13T10:57:33","guid":{"rendered":"https:\/\/www.sense.org.uk\/?p=17406"},"modified":"2026-04-15T11:46:28","modified_gmt":"2026-04-15T10:46:28","slug":"sense-support-worker-thomas-christmas-appeal","status":"publish","type":"post","link":"https:\/\/www.sense.org.uk\/blog\/sense-support-worker-thomas-christmas-appeal\/","title":{"rendered":"Sense found a way of communicating with Thomas that\u2019s as unique as he is"},"content":{"rendered":"\n<p class=\"is-style-intro\">The star of our Christmas appeal this year is Thomas. He\u2019s seven, and has been supported by Sense since he was two. Thomas has <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/charge-syndrome\/\">CHARGE syndrome<\/a>. He\u2019s completely <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/deafness-and-hearing-loss\/\">deaf<\/a>, and he has a form of <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/blindness-and-visual-impairment\/\">visual impairment<\/a> called coloboma, but the vision he has, he uses really well. He also has low muscle tone, so he sometimes uses a wheelchair or walker.&nbsp;<\/p>\n\n\n\n<p class=\"is-style-intro\">Thomas\u2019s specialist support worker Alex explains how Sense has supported Thomas as he\u2019s become the confident and curious boy he is today.<\/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\/2022\/12\/Thomas-1597-1024x683.jpg\" alt=\"Thomas, a small boy with blonde hair, reading a book in his wheelchair.\" class=\"wp-image-17408\" srcset=\"https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/12\/Thomas-1597-1024x683.jpg 1024w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/12\/Thomas-1597-600x400.jpg 600w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/12\/Thomas-1597-768x512.jpg 768w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/12\/Thomas-1597-1536x1024.jpg 1536w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/12\/Thomas-1597-2048x1365.jpg 2048w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/12\/Thomas-1597-900x600.jpg 900w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/12\/Thomas-1597-500x333.jpg 500w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/12\/Thomas-1597-1600x1067.jpg 1600w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<p>Children like Thomas, who are <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/deafblindness\/\">deafblind<\/a> or have <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/what-does-complex-disabilities-mean\/\">complex needs<\/a>, need support that\u2019s as unique as they are. We\u2019ve been working with Thomas and his whole family to provide that tailored support since 2018, when he was around two.\u00a0<\/p>\n\n\n\n<p>Thomas\u2019s family got in touch when they heard about some of our events in their area. First of all, we paid a visit to Thomas at home, to find out more about him and what kind of support he needed. We found that he was an extremely fun, easy-going and laid-back little boy!<\/p>\n\n\n\n<p>Right from the beginning, Thomas\u2019s family have been invited to Sense\u2019s <a href=\"https:\/\/www.sense.org.uk\/blog\/sense-christmas-family-days-make-sure-no-one-is-left-out-of-the-festive-season\/\">Family Days<\/a>, and they love getting stuck into the activities. So that\u2019s one of the main ways we\u2019ve supported Thomas.<\/p>\n\n\n\n<p>We also offered advice and support to the staff at his nursery, and he now has special support from Sense in school, too.&nbsp;<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>It\u2019s all about adapting communication to fit each child<\/strong><\/h2>\n\n\n\n<p>Thomas was diagnosed with CHARGE as a baby, but that doesn\u2019t mean the same thing for every child. CHARGE syndrome is like a spectrum, and people experience it differently.&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-image alignleft size-large is-resized\"><img decoding=\"async\" src=\"https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/12\/Thomas-1842-683x1024.jpg\" alt=\"Thomas and his mum laughing together.\" class=\"wp-image-17413\" style=\"width:483px;height:725px\"\/><\/figure>\n\n\n\n<p>So one of the first things we did with Thomas was create an \u201cidentification report\u201d, which goes into more detail about his specific needs. This informed his <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/life-stages\/childhood-and-school\/send-education-special-education-needs-disabilities\/education-health-and-care-plans\/\">education, health and care plan<\/a>.&nbsp;<\/p>\n\n\n\n<p>We observed Thomas to figure out what kind of communication would work for him. For every child with multi-sensory impairments, it\u2019s different.&nbsp;<\/p>\n\n\n\n<p>It\u2019s all about adapting and combining different tools to fit each child. There\u2019s no one rule that fits every child.&nbsp;<\/p>\n\n\n\n<p>When we first met Thomas as a toddler, we immediately began exploring what communication tools could be helpful for him.<\/p>\n\n\n\n<p>Today, Thomas has come on leaps and bounds in his communication. He\u2019s in the early stages of learning to use sign-supported English, which borrows some BSL signs but without using BSL grammatical rules.&nbsp;<\/p>\n\n\n\n<p>He mostly uses touch and gestures to communicate. And he can make it very clear when he doesn\u2019t want to do something!<\/p>\n\n\n\n<p>He has also started trying to use a Picture Exchange Communication System (PECS), which is a way of communicating using picture cards. We\u2019re gradually encouraging him to try out lots of different tools.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>It\u2019s lovely to see Thomas grow in confidence<\/strong><\/h2>\n\n\n\n<p>Recently Thomas had a big breakthrough when we took him to a snow sports centre. He had been there once before, for a Sense event a couple of years ago.&nbsp;<\/p>\n\n\n\n  <div class=\"wp-block  box    is-style-textured-primary-tint-10  align-right  size-medium\">    <div class=\"acf-innerblocks-container\">\n\n<p>Will you donate today to give children like Thomas the support they need to live life to the full?<\/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\/116133\/donate\/1?ea.tracking.id=thomas-blog\">Donate<\/a><\/div>\n<\/div>\n\n<\/div>\n  <\/div>\n\n\n\n\n<p>Immediately, he showed signs that he remembered where he was. He knew where to go, and didn\u2019t wait for anyone to take him. Because of his mobility and communication challenges, showing such confidence was a big breakthrough for him! It was lovely to see.<\/p>\n\n\n\n<p>Physically, he\u2019s getting a lot quicker in general. When he has his walker, he\u2019s a speed demon \u2013 we were struggling to catch up to him on a recent Family Day. And that was before he got into a go-kart!&nbsp;<\/p>\n\n\n\n<p>Thomas is always happy to try new things. At our last <a href=\"https:\/\/www.sense.org.uk\/blog\/sense-christmas-family-days-make-sure-no-one-is-left-out-of-the-festive-season\/\">Christmas Family Day<\/a>, it was a joy to do some baking with him. He was getting really messy making sticky chocolate buns.&nbsp;<\/p>\n\n\n\n<p>He also loves animals, because he loves exploring things through touch. So feeling the different textures of animals makes him happy.&nbsp;<\/p>\n\n\n\n<p>At Sense Family Days, it\u2019s a safe environment for him to try new things, and he gets to be with his family, too. It\u2019s made such a difference. From when we first met him to now, he\u2019s become such a confident (and cheeky!) little boy.&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\/2022\/12\/Thomas-2007-1024x683.jpg\" alt=\"Thomas, a small boy with blonde hair, and his dad playing with a drum in Sense's children's room at TouchBase Pears in Birmingham. \" class=\"wp-image-17411\" srcset=\"https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/12\/Thomas-2007-1024x683.jpg 1024w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/12\/Thomas-2007-600x400.jpg 600w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/12\/Thomas-2007-768x512.jpg 768w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/12\/Thomas-2007-1536x1024.jpg 1536w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/12\/Thomas-2007-2048x1365.jpg 2048w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/12\/Thomas-2007-900x600.jpg 900w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/12\/Thomas-2007-500x333.jpg 500w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/12\/Thomas-2007-1600x1067.jpg 1600w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Help us support children like Thomas to experience the world<\/strong><\/h2>\n\n\n\n<p>Your Christmas donation to Sense goes towards children like Thomas and their families having those special moments.&nbsp;<\/p>\n\n\n\n<p>With the cost of living crisis, this coming Christmas is a tough one for families with disabled children. <a href=\"https:\/\/www.sense.org.uk\/blog\/sense-showed-festive-fun-was-possible\/\">Sense Christmas Family Days give them some time away from the stresses of everyday life.<\/a> It also helps connect them with other families and professionals that understand them.&nbsp;<\/p>\n\n\n\n<p>Your donation also helps us to keep supporting children like Thomas to develop their communication skills, and thrive at school.&nbsp;<\/p>\n\n\n\n<p>It could also go towards providing wonderful activities, or specific toys that help with Thomas\u2019s development.<\/p>\n\n\n\n<p>At Christmas time, it\u2019s so special for a child like Thomas to be able to open a present just like his peers, and find inside something that\u2019s just right for him.&nbsp;<\/p>\n\n\n\n<p>Christmas time is all about families, and your loved ones. When you donate to Sense, you give families those opportunities to access activities, support and communication during the festive period, and all year round.<\/p>\n\n\n\n  <div class=\"wp-block  box    is-style-textured-primary-tint-10  size-large\">    <div class=\"acf-innerblocks-container\">\n\n<h2 class=\"wp-block-heading\">Help support a child like Thomas<\/h2>\n\n\n\n<p>Thanks to donations from people like you, we were able to support Thomas through nursery, and we&#8217;ll keep supporting him and his family as he grows up. <\/p>\n\n\n\n<p><strong>Now, will you give so we can support another child with multi-sensory impairments to achieve whatever they want to achieve?<\/strong><\/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\/116133\/donate\/1?ea.tracking.id=alex-blog\">Donate today<\/a><\/div>\n<\/div>\n\n<\/div>\n  <\/div>\n\n","protected":false},"excerpt":{"rendered":"<p>Thomas is seven and has CHARGE syndrome. His specialist support worker Alex explains how Sense has supported him since he was two. <\/p>\n","protected":false},"author":14,"featured_media":17408,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_searchwp_excluded":"","footnotes":""},"categories":[7],"tags":[],"display_author":[380],"class_list":["post-17406","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog","display_author-alex-holmes"],"acf":[],"_links":{"self":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts\/17406","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\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/comments?post=17406"}],"version-history":[{"count":0,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts\/17406\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/media\/17408"}],"wp:attachment":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/media?parent=17406"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/categories?post=17406"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/tags?post=17406"},{"taxonomy":"display_author","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/display_author?post=17406"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}