{"id":6290,"date":"2022-04-21T13:23:42","date_gmt":"2022-04-21T12:23:42","guid":{"rendered":"https:\/\/www.sense.org.uk\/?page_id=6290"},"modified":"2024-05-21T14:13:05","modified_gmt":"2024-05-21T13:13:05","slug":"charge-syndrome-speech-and-language-therapy","status":"publish","type":"page","link":"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/charge-syndrome\/charge-syndrome-speech-and-language-therapy\/","title":{"rendered":"CHARGE syndrome: speech and language therapy"},"content":{"rendered":"\n<p class=\"is-style-intro\">This page is about speech and language therapy for children and young people with CHARGE syndrome.<\/p>\n\n\n\n<p>It tells you about the different medical and educational professionals involved.&nbsp;<\/p>\n\n\n\n<p>It also covers the key role of speech and language therapists, key periods they\u2019ll be involved, and the importance of involving parents and families.<\/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=\"#no\">No two children are the same<\/a><\/li>\n\n\n\n<li><a href=\"#team\">A multidisciplinary team approach<\/a><\/li>\n\n\n\n<li><a href=\"#key\">Key periods when speech and language therapists are involved<\/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=\"no\"><strong>No two children are the same<\/strong><\/h2>\n\n\n\n<p>Children with CHARGE syndrome benefit from speech and language therapy to develop their language and social skills.<\/p>\n\n\n\n<p><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/charge-syndrome\/what-is-charge-syndrome\/\">CHARGE syndrome has many features<\/a> and these vary greatly from person to person. <\/p>\n\n\n\n<p>So, no two children with CHARGE syndrome are the same or have identical needs.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"team\"><strong>A multidisciplinary team approach<\/strong><\/h2>\n\n\n\n<p>For these reasons, it is likely that your child\u2019s speech and language therapy will involve a multidisciplinary team approach, involving:<\/p>\n\n\n\n<ul class=\"is-style-primary-bullets wp-block-list\">\n<li>You and your family.<\/li>\n\n\n\n<li>A speech and language therapist.<\/li>\n\n\n\n<li>Classroom teacher.<\/li>\n\n\n\n<li>Teacher of children who are <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/deafness-and-hearing-loss\/\">deaf or hearing impaired<\/a>.<\/li>\n\n\n\n<li>Teacher of children who are <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/blindness-and-visual-impairment\/\">visually impaired or blind<\/a>.<\/li>\n\n\n\n<li>Teacher of children who are <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/deafblindness\/\">multi-sensory impaired (MSI)\/deafblind<\/a>.<\/li>\n\n\n\n<li>Audiologist.<\/li>\n\n\n\n<li>Occupational therapist.<\/li>\n\n\n\n<li>Physiotherapist.&nbsp;<\/li>\n\n\n\n<li>Other medical professionals.<\/li>\n<\/ul>\n\n\n\n  <div class=\"wp-block  box    is-style-textured-secondary-tint-10\">    <div class=\"acf-innerblocks-container\">\n\n<h3 class=\"wp-block-heading\" id=\"speech\"><strong>Speech and language therapists<\/strong><\/h3>\n\n\n\n<p>The speech and language therapist should ideally have knowledge of the following areas of speech and language therapy practice.<\/p>\n\n\n\n<ul class=\"is-style-secondary-bullets wp-block-list\">\n<li>Hearing impairment.<\/li>\n\n\n\n<li>Visual impairment.<\/li>\n\n\n\n<li>Craniofacial disorders.<\/li>\n\n\n\n<li><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/charge-syndrome\/charge-syndrome-eating-and-drinking-difficulties\/\">Eating and drinking difficulties<\/a>.<\/li>\n\n\n\n<li>Gastro-oesophageal reflux \u2013 acid from the stomach leaks up into the oesophagus (gullet).<\/li>\n\n\n\n<li>Facial palsy \u2013 weakness of the facial muscles due to damage to the facial nerve.<\/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 issues<\/a> \u2013 how all of the body\u2019s senses work together.<\/li>\n\n\n\n<li>Tracheostomy \u2013 a surgical hole through the front of the neck and into the trachea (windpipe).<\/li>\n\n\n\n<li><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/learning-disabilities\/\">Learning disability<\/a>.<\/li>\n<\/ul>\n\n\n\n<p>The following may also play an important role in your child\u2019s speech and language therapy:<\/p>\n\n\n\n<ul class=\"is-style-secondary-bullets wp-block-list\">\n<li>A lead speech and language therapist responsible for coordinating the work of the other medical and educational professionals listed above.<\/li>\n\n\n\n<li>An intervenor \u2013&nbsp;a specialist one-to-one support person trained in working with people with multi-sensory impairment, working under the lead speech and language therapist\u2019s supervision.&nbsp;<\/li>\n<\/ul>\n\n<\/div>\n  <\/div>\n\n\n\n\n<h3 class=\"wp-block-heading\" id=\"you\"><strong>You are part of the team<\/strong><\/h3>\n\n\n\n<p>The medical and educational professionals involved in your child\u2019s speech and language therapy should:<\/p>\n\n\n\n<ul class=\"is-style-primary-bullets wp-block-list\">\n<li>Involve you and your family, offering support and providing the information you need to make informed choices.<\/li>\n\n\n\n<li>Work with you to put a plan in place to support the carry-over of approaches into your home and other settings.<\/li>\n\n\n\n<li>View your child holistically \u2013&nbsp;as a whole person, not just as someone with features of a complex syndrome.<\/li>\n\n\n\n<li>Check in with you throughout your child\u2019s development, making it clear how you can access speech and language therapy services, and what to do if you have any questions at any time after your child has been discharged from care.<\/li>\n\n\n\n<li>Provide you with information about support networks.<\/li>\n<\/ul>\n\n\n\n<p>It\u2019s also worth remembering that sometimes children put one skill on hold while they develop another.<\/p>\n\n\n\n<p>For example, your child may appear to stop developing their speech and language skills while they focus on learning to walk.&nbsp;&nbsp;<\/p>\n\n\n\n<p>But once they\u2019ve learned to walk, they\u2019ll start working on their speech and language skills again.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"key\"><strong>Key periods when speech and language therapists are involved<\/strong><\/h2>\n\n\n\n<p>The key periods when speech and language therapists will be involved in supporting your child and your family are:<\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"neonatal\"><strong>Neonatal<\/strong><\/h3>\n\n\n\n<p>During neonatal care \u2013&nbsp;the first four weeks of your child\u2019s life \u2013 speech and language therapists will be involved in:<\/p>\n\n\n\n<ul class=\"is-style-secondary-bullets wp-block-list\">\n<li>Supporting diagnosis.<\/li>\n\n\n\n<li>Planning early care interventions, particularly if your child has:\n<ul class=\"wp-block-list\">\n<li>a cleft lip or palate.<\/li>\n\n\n\n<li>tracheo-oesophageal fistula \u2013 hole between the windpipe and the gullet.<\/li>\n\n\n\n<li>choanal atresia \u2013 nasal passages blocked by bone or tissue.&nbsp;<\/li>\n<\/ul>\n<\/li>\n\n\n\n<li>Early management of eating and drinking issues, when feeding tubes are inserted.<\/li>\n\n\n\n<li>Providing you as a parent with the support and knowledge needed to reduce eating and drinking difficulties later on.<\/li>\n\n\n\n<li>Supporting bonding between you and your child during a difficult period involving many medical procedures.<\/li>\n<\/ul>\n\n\n\n<p>Read more about <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/charge-syndrome\/what-is-charge-syndrome\/\">the key features of CHARGE syndrome<\/a>.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"early\"><strong>Early years<\/strong><\/h3>\n\n\n\n<ul class=\"is-style-primary-bullets wp-block-list\">\n<li>Supporting the development of <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/charge-syndrome\/charge-syndrome-communication\/\">communication skills<\/a>.&nbsp;<\/li>\n\n\n\n<li>Supporting the development of <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/charge-syndrome\/charge-syndrome-eating-and-drinking-difficulties\/\">eating and drinking skills<\/a>.<\/li>\n\n\n\n<li>Supporting you as a parent to find the right educational setting for your child. <\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"school\"><strong>School age<\/strong><\/h3>\n\n\n\n<ul class=\"is-style-secondary-bullets wp-block-list\">\n<li>Continuing support for communication and language skills.<\/li>\n\n\n\n<li>Supporting the development of social relationships.<\/li>\n\n\n\n<li>Supporting later development of eating and drinking skills.<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"transition\"><strong>Transition into adulthood<\/strong><\/h3>\n\n\n\n<ul class=\"is-style-primary-bullets wp-block-list\">\n<li>Supporting your child as a young person to express their needs and wishes in <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/life-stages\/transition-moving-from-children-to-adult-services\/transition-planning\/\">transition planning<\/a>, and <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/life-stages\/adult-life-and-planning-for-your-future\/making-decisions-about-your-life\/\">make informed choices<\/a> (if needed).<\/li>\n\n\n\n<li>Supporting independence and further developing social relationships.<\/li>\n<\/ul>\n\n\n\n<p><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/life-stages\/childhood-and-school\/send-education-special-education-needs-disabilities\/\">Read more about special educational needs and disabilities (SEND).<\/a><\/p>\n\n\n\n  <div class=\"wp-block  box  ctaBox    is-style-textured-secondary-tint-10\">\n    <div class=\"ctaBox__row\">\n      <div class=\"ctaBox__content\">\n        <div class=\"acf-innerblocks-container\">\n\n<h2 class=\"wp-block-heading\">Support from Sense<\/h2>\n\n\n\n<p>We&#8217;re here for people with complex disabilities and their families all over the UK. Get in touch to find out more about the services we offer.<\/p>\n\n<\/div>\n      <\/div>\n\n      <div class=\"ctaBox__cta\">\n        <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/information-and-advice-service\/\" class=\"button  button--primary\">Find out more<\/a>\n      <\/div>\n    <\/div>\n\n  <\/div>\n\n\n\n\n<p>This content was last reviewed in July 2023. 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