{"id":6324,"date":"2022-04-21T14:06:04","date_gmt":"2022-04-21T13:06:04","guid":{"rendered":"https:\/\/www.sense.org.uk\/?page_id=6324"},"modified":"2023-08-14T11:05:53","modified_gmt":"2023-08-14T10:05:53","slug":"charge-syndrome-communication","status":"publish","type":"page","link":"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/charge-syndrome\/charge-syndrome-communication\/","title":{"rendered":"CHARGE syndrome: communication"},"content":{"rendered":"\n<p class=\"is-style-intro\">This page is about how CHARGE syndrome affects the development of children\u2019s communication skills.&nbsp;<\/p>\n\n\n\n<p class=\"is-style-default\">It covers specific features of the condition and their effects, ways to create the right conditions for communication with your child, and a total communication approach.&nbsp;<\/p>\n\n\n\n<p>There are also links throughout to other pages on this site for more detailed information on many of the topics included here.<\/p>\n\n\n\n<p class=\"is-style-default\">On this page:<\/p>\n\n\n\n<ul class=\"is-style-primary-bullets wp-block-list\">\n<li><a href=\"#why\">Why are communication skills affected in children with CHARGE syndrome?&nbsp;<\/a><\/li>\n\n\n\n<li><a href=\"#creating\">Creating the right conditions for communication<\/a><\/li>\n\n\n\n<li><a href=\"#total\">A total communication approach<\/a><\/li>\n<\/ul>\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<h2 class=\"wp-block-heading\"><strong>Sense is here for everyone with CHARGE syndrome<\/strong><\/h2>\n\n\n\n<p class=\"is-style-default\"><a href=\"https:\/\/www.sense.org.uk\/our-services\/support-in-your-area\/\">We offer support all over the UK<\/a>. Whether you need some expert advice, a place to socialise, or help with communicating or getting around, we offer something for everyone. Because no one should be left out of life.<\/p>\n\n\n\n<p class=\"is-style-default\">To find out what kind of support we could give you or your loved one, speak to one of our friendly team.<\/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 is-style-secondary\"><a class=\"wp-block-button__link wp-element-button\" href=\"https:\/\/www.sense.org.uk\/information-and-advice\/information-and-advice-service\/\">Contact us<\/a><\/div>\n<\/div>\n\n<\/div>\n  <\/div>\n\n\n\n\n<h2 class=\"wp-block-heading\" id=\"why\"><strong>Why are communication skills affected in children with CHARGE syndrome?&nbsp;<\/strong><\/h2>\n\n\n\n<p class=\"is-style-intro\">CHARGE syndrome is a condition with many features, including:<\/p>\n\n\n\n<ul class=\"is-style-secondary-bullets wp-block-list\">\n<li><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/charge-syndrome\/charge-ear-hearing-loss-treatments\/\">Hearing impairment.<\/a><\/li>\n\n\n\n<li><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/charge-syndrome\/coloboma-treatments-management\/\">Vision impairment.<\/a><\/li>\n\n\n\n<li><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/charge-syndrome\/charge-syndrome-sensory-integration-problems\/\">Sensory integration problems<\/a> \u2013 all of our senses working together so that we can function properly in everyday life.<\/li>\n\n\n\n<li>Executive function difficulties \u2013 the mental skills we use to organise and manage tasks in everyday life, and control behaviour.&nbsp;<\/li>\n<\/ul>\n\n\n\n<p>As a result, in many children with CHARGE syndrome, their communication skills are affected.&nbsp;This can affect their ability to express themselves and understand others.&nbsp;<\/p>\n\n\n\n<p>Specifically, communication skills in children with CHARGE can be affected by:<\/p>\n\n\n\n<ul class=\"is-style-primary-bullets wp-block-list\">\n<li>Varying degrees of <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/deafness-and-hearing-loss\/\">hearing loss<\/a>, depending on their symptoms and whether they can be effectively treated with hearing aids or cochlear implants. <\/li>\n\n\n\n<li><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/blindness-and-visual-impairment\/\">Sight problems<\/a> ranging from blurring of images to no perception of light or sight at all.<\/li>\n\n\n\n<li>Delayed visual maturation. This is seen in newborns who at first don\u2019t seem able to see or follow objects with their eyes. It usually improves by about four to six months of age without treatment, but can sometimes take up to 12 months.<\/li>\n\n\n\n<li>Difficulty predicting the results of things they do or the effect on others (an executive function difficulty). This can lead to delayed reactions \u2013 which don\u2019t always mean they don\u2019t want to communicate. They just need more time.<\/li>\n\n\n\n<li>Difficulty understanding abstract symbols (symbols that don\u2019t refer to a specific object), if both their sight and hearing are affected.<\/li>\n\n\n\n<li>Difficulty with intentional communication \u2013 for example, not understanding that pointing at a cup might encourage someone to get the cup or start talking about the cup.<\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"creating\"><strong>Creating the right conditions for communication<\/strong><\/h2>\n\n\n\n<p>Children with CHARGE syndrome need people to respond to them sensitively in a way that is meaningful to them.&nbsp;<\/p>\n\n\n\n<p>They often have their own way of processing information and how they feel, emotionally and physically, before they respond.<\/p>\n\n\n\n<p>It\u2019s important that they understand they can trust you and others to respond to them. This is essential to developing communication skills.<\/p>\n\n\n\n<p>You can create the right conditions for trust and good communication with your child by:<\/p>\n\n\n\n<ul class=\"is-style-primary-bullets wp-block-list\">\n<li>Establishing a good relationship with them so that you can learn to recognise their processes and adapt to them.&nbsp;<\/li>\n\n\n\n<li>Organising their world by providing a safe physical and social environment.<\/li>\n\n\n\n<li>Establish routines and predictable ways of doing things so that they feel safe.<\/li>\n\n\n\n<li>Creating interesting situations that will stimulate them.<\/li>\n\n\n\n<li>Providing enough one-to-one time.<\/li>\n\n\n\n<li>Allowing them to take the initiative and bring their own to the conversation.<\/li>\n<\/ul>\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\" id=\"total\"><strong>A total communication approach<\/strong><\/h2>\n\n\n\n<p>A total communication approach works best for children with CHARGE syndrome.&nbsp;<\/p>\n\n\n\n<p>Total communication uses all forms of communication, including speech, vocalisations, body language, <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/communication\/sign-language\/\">sign language<\/a>, written text, <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/communication\/braille\/\">braille<\/a>, pictures and photographs, <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/communication\/objects-of-reference\/\">objects<\/a>, concrete or tangible symbols (referring to specific objects) and more.<\/p>\n\n\n\n<p><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/communication\/total-communication\/\">Read more about total communication.<\/a><\/p>\n\n<\/div>\n  <\/div>\n\n\n\n\n<p>This content was last reviewed in July 2023. 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