{"id":783,"date":"2022-10-03T15:09:11","date_gmt":"2022-10-03T13:09:11","guid":{"rendered":"https:\/\/supportnmd.be\/0-11-ans\/sante-bien-etre\/informatie-praten-over-de-ziekte-met-het-kind\/"},"modified":"2023-05-17T11:30:36","modified_gmt":"2023-05-17T09:30:36","slug":"information-parler-de-la-maladie-avec-son-enfant","status":"publish","type":"page","link":"https:\/\/supportnmd.be\/fr\/0-11-ans\/sante-bien-etre\/information-parler-de-la-maladie-avec-son-enfant\/","title":{"rendered":"Information et parler de la maladie avec son enfant"},"content":{"rendered":"<div class=\"wpb-content-wrapper\"><p>[vc_row full_width=\u00a0\u00bbstretch_row_content\u00a0\u00bb equal_height=\u00a0\u00bbyes\u00a0\u00bb bg_color=\u00a0\u00bbbg_white\u00a0\u00bb bg_wave=\u00a0\u00bbwave\u00a0\u00bb css=\u00a0\u00bb.vc_custom_1660139282642{padding-top: 0px !important;padding-bottom: 0px !important;}\u00a0\u00bb][vc_column width=\u00a0\u00bb1\/3&Prime; col_color=\u00a0\u00bbgray\u00a0\u00bb css=\u00a0\u00bb.vc_custom_1659445491606{padding-top: 100px !important;padding-bottom: 100px !important;}\u00a0\u00bb]\r\n        <div class=\"sd-block-menu  marginbottom-30px\r\n        \">\r\n        <div class=\"sd-block-title \">\r\n            <h3 class=\"sd-block-title-htag  marginbottom-30px align-left color-green family-caveat\r\n            \">\r\n                Sujets\r\n                <span class=\"sub-title color-black font-middle family-calistoga\">Sant\u00e9 et Bien-\u00eatre<\/span>\r\n            <\/h3>\r\n        <\/div><ul><li class=\"menu-item\">\r\n                    <a href=\"https:\/\/supportnmd.be\/0-11-jaar\/gezondheid-en-algemeen-welzijn\/neuromusculair-referentiecentrum-nmrc\/\">\r\n        <div class=\"sd-block-title \">\r\n            <h4 class=\"sd-block-title-htag  marginbottom-0px align-left family-calistoga\r\n            \">\r\n                Centre de r\u00e9f\u00e9rence pour les maladies neuromusculaires (CRMN)\r\n                \r\n            <\/h4>\r\n        <\/div><svg width=\"15\" height=\"15\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewBox=\"0 0 448 512\"><path fill=\"currentColor\" d=\"M190.5 66.9l22.2-22.2c9.4-9.4 24.6-9.4 33.9 0L441 239c9.4 9.4 9.4 24.6 0 33.9L246.6 467.3c-9.4 9.4-24.6 9.4-33.9 0l-22.2-22.2c-9.5-9.5-9.3-25 .4-34.3L311.4 296H24c-13.3 0-24-10.7-24-24v-32c0-13.3 10.7-24 24-24h287.4L190.9 101.2c-9.8-9.3-10-24.8-.4-34.3z\"><\/path><\/svg><\/a><\/li><li class=\"menu-item\">\r\n                    <a href=\"https:\/\/supportnmd.be\/0-11-jaar\/gezondheid-en-algemeen-welzijn\/patientenverenigingen\/\">\r\n        <div class=\"sd-block-title \">\r\n            <h4 class=\"sd-block-title-htag  marginbottom-0px align-left family-calistoga\r\n            \">\r\n                Associations de patients\r\n                \r\n            <\/h4>\r\n        <\/div><svg width=\"15\" height=\"15\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewBox=\"0 0 448 512\"><path fill=\"currentColor\" d=\"M190.5 66.9l22.2-22.2c9.4-9.4 24.6-9.4 33.9 0L441 239c9.4 9.4 9.4 24.6 0 33.9L246.6 467.3c-9.4 9.4-24.6 9.4-33.9 0l-22.2-22.2c-9.5-9.5-9.3-25 .4-34.3L311.4 296H24c-13.3 0-24-10.7-24-24v-32c0-13.3 10.7-24 24-24h287.4L190.9 101.2c-9.8-9.3-10-24.8-.4-34.3z\"><\/path><\/svg><\/a><\/li><li class=\"menu-item\">\r\n                    <a href=\"https:\/\/supportnmd.be\/0-11-jaar\/gezondheid-en-algemeen-welzijn\/ouderverenigingen\/\">\r\n        <div class=\"sd-block-title \">\r\n            <h4 class=\"sd-block-title-htag  marginbottom-0px align-left family-calistoga\r\n            \">\r\n                Associations de parents\r\n                \r\n            <\/h4>\r\n        <\/div><svg width=\"15\" height=\"15\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewBox=\"0 0 448 512\"><path fill=\"currentColor\" d=\"M190.5 66.9l22.2-22.2c9.4-9.4 24.6-9.4 33.9 0L441 239c9.4 9.4 9.4 24.6 0 33.9L246.6 467.3c-9.4 9.4-24.6 9.4-33.9 0l-22.2-22.2c-9.5-9.5-9.3-25 .4-34.3L311.4 296H24c-13.3 0-24-10.7-24-24v-32c0-13.3 10.7-24 24-24h287.4L190.9 101.2c-9.8-9.3-10-24.8-.4-34.3z\"><\/path><\/svg><\/a><\/li><li class=\"menu-item current-item\">\r\n                    <a href=\"https:\/\/supportnmd.be\/0-11-jaar\/gezondheid-en-algemeen-welzijn\/informatie-praten-over-de-ziekte-met-het-kind\/\">\r\n        <div class=\"sd-block-title \">\r\n            <h4 class=\"sd-block-title-htag  marginbottom-0px align-left family-calistoga\r\n            \">\r\n                Information et parler de la maladie avec son enfant\r\n                \r\n            <\/h4>\r\n        <\/div><svg width=\"15\" height=\"15\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewBox=\"0 0 448 512\"><path fill=\"currentColor\" d=\"M190.5 66.9l22.2-22.2c9.4-9.4 24.6-9.4 33.9 0L441 239c9.4 9.4 9.4 24.6 0 33.9L246.6 467.3c-9.4 9.4-24.6 9.4-33.9 0l-22.2-22.2c-9.5-9.5-9.3-25 .4-34.3L311.4 296H24c-13.3 0-24-10.7-24-24v-32c0-13.3 10.7-24 24-24h287.4L190.9 101.2c-9.8-9.3-10-24.8-.4-34.3z\"><\/path><\/svg><\/a><\/li><li class=\"menu-item\">\r\n                    <a href=\"https:\/\/supportnmd.be\/0-11-jaar\/gezondheid-en-algemeen-welzijn\/algemene-ondersteuning\/\">\r\n        <div class=\"sd-block-title \">\r\n            <h4 class=\"sd-block-title-htag  marginbottom-0px align-left family-calistoga\r\n            \">\r\n                Support g\u00e9n\u00e9ral\r\n                \r\n            <\/h4>\r\n        <\/div><svg width=\"15\" height=\"15\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewBox=\"0 0 448 512\"><path fill=\"currentColor\" d=\"M190.5 66.9l22.2-22.2c9.4-9.4 24.6-9.4 33.9 0L441 239c9.4 9.4 9.4 24.6 0 33.9L246.6 467.3c-9.4 9.4-24.6 9.4-33.9 0l-22.2-22.2c-9.5-9.5-9.3-25 .4-34.3L311.4 296H24c-13.3 0-24-10.7-24-24v-32c0-13.3 10.7-24 24-24h287.4L190.9 101.2c-9.8-9.3-10-24.8-.4-34.3z\"><\/path><\/svg><\/a><\/li><\/ul>\r\n        <\/div>[\/vc_column][vc_column width=\u00a0\u00bb3\/6&Prime; css=\u00a0\u00bb.vc_custom_1659445498334{padding-top: 100px !important;padding-bottom: 100px !important;}\u00a0\u00bb]\r\n        <div class=\"sd-block-title \">\r\n            <h1 class=\"sd-block-title-htag  marginbottom-60px align-left color-black family-calistoga\r\n            \">\r\n                Information et parler de la maladie avec son enfant\r\n                \r\n            <\/h1>\r\n        <\/div>\r\n        <div class=\"sd-block-text  marginbottom-30px\r\n        \">\r\n            <p>Reconna\u00eetre l&rsquo;importance d&rsquo;apprendre aux enfants \u00e0 g\u00e9rer positivement le handicap est un premier pas. Mais mettre cela en pratique est souvent plus difficile.<\/p>\n<p>Ci-dessous vous trouverez quelques suggestions qui permettent de parler d&rsquo;une limitation ou d&rsquo;un handicap d&rsquo;une mani\u00e8re \u00ab\u00a0diff\u00e9rente\u00a0\u00bb. Toutefois, vous \u00eates le parent et ressentez le mieux le besoin de votre enfant. D&rsquo;autres parents d&rsquo;enfants souffrant d&rsquo;une maladie neuromusculaire peuvent peut-\u00eatre aussi vous porter conseil. N&rsquo;h\u00e9sitez pas \u00e0 demander de l&rsquo;aide \u00e0 un professionnel tel que le psychologue du CRMN.<\/p>\n<ul>\n<li><strong>Parlez ouvertement de son handicap.<br \/>\n<\/strong> Les enfants \u00e9coutent souvent ce que disent les adultes qui les entourent et nous devons nous assurer qu&rsquo;ils savent qu&rsquo;ils ont le droit de parler de tout cela. Expliquez les choses clairement et n&rsquo;utilisez pas de mots difficiles.<\/li>\n<li><strong>R\u00e9pondez \u00e0 toutes les questions de mani\u00e8re honn\u00eate et sinc\u00e8re.<br \/>\n<\/strong> Nous savons qu&rsquo;il existe de nombreuses diff\u00e9rences dans le monde et nous devrions apprendre \u00e0 nos enfants que les personnes en situation de handicap sont aussi des personnes normales. Lorsque les enfants posent des questions, nous devons essayer d&rsquo;y r\u00e9pondre sans porter de jugement.<\/li>\n<li><strong>Traitez le handicap de mani\u00e8re positive.<br \/>\n<\/strong> Bien que le chemin \u00e0 parcourir soit encore long, il y a de plus en plus de livres et de programmes t\u00e9l\u00e9vis\u00e9s sur les personnes en situation de handicap. C&rsquo;est par le jeu que les enfants apprennent le mieux (cela vaut parfois aussi pour les adultes).<\/li>\n<li><strong>Soulignez les similitudes.<br \/>\n<\/strong> Les enfants comme les adultes comprennent mieux les choses lorsqu&rsquo;ils ont un cadre de r\u00e9f\u00e9rence. Montrez aux enfants qu&rsquo;ils ne sont pas du tout diff\u00e9rents d&rsquo;un ami sans handicap. Ils jouent tous les deux avec les m\u00eames jouets. Les enfants sont dou\u00e9s pour trouver des similitudes et c&rsquo;est une excellente occasion de discuter du handicap et d&rsquo;\u00e9viter d&rsquo;autres pr\u00e9jug\u00e9s.<\/li>\n<\/ul>\n\r\n        <\/div>[vc_row_inner row_inner_color=\u00a0\u00bbgray\u00a0\u00bb css=\u00a0\u00bb.vc_custom_1659708720386{margin-bottom: 30px !important;}\u00a0\u00bb][vc_column_inner]\r\n        <div class=\"sd-block-title \">\r\n            <h3 class=\"sd-block-title-htag  marginbottom-30px align-left color-black family-calistoga\r\n            \">\r\n                Liens utiles\r\n                \r\n            <\/h3>\r\n        <\/div>\r\n        <div class=\"sd-block-text  marginbottom-30px\r\n        \">\r\n            <ul>\n<li><strong>Together in SMA<\/strong><br \/>\n<a href=\"https:\/\/care.togetherinsma.be\">https:\/\/care.togetherinsma.be<\/a><br \/>\nSite web informatif sur la SMA pour les parents et les patients atteints de SMA. (Belgique)<\/li>\n<li><strong>Open ado<\/strong><br \/>\n<a href=\"https:\/\/www.provincedeliege.be\/fr\/openado\">https:\/\/www.provincedeliege.be\/fr\/openado<\/a><br \/>\nLe centre li\u00e9geois et ses antennes dans diff\u00e9rentes communes accueillent les jeunes jusqu&rsquo;\u00e0 25 ans et leurs parents qui traversent des situations d\u00e9licates, souhaitent se confier ou s&rsquo;informer&#8230; sur toute les situations li\u00e9es \u00e0 l&rsquo;enfance et \u00e0 l&rsquo;adolescence afin d&rsquo;y trouver une r\u00e9ponse psycho-m\u00e9dic-sociale. (Wallonie)<\/li>\n<li><strong>Livres<\/strong><br \/>\n<a href=\"https:\/\/www.plateformeannoncehandicap.be\/bibliographie\/\">https:\/\/www.plateformeannoncehandicap.be\/bibliographie\/<\/a><br \/>\nLa Plateforme Annonce Handicap, en collaboration avec le centre de documentation de l\u2019AVIQ, du CEFES et du ex-CEDS, vous propose une bibliographie tr\u00e8s compl\u00e8te d\u2019ouvrages, de brochures, d\u2019articles, d\u2019\u0153uvres audiovisuelles etc. traitant de l\u2019annonce, du handicap, de la d\u00e9ficience et de la relation aux personnes en situation de handicap. (Wallonie &#8211; Bruxelles)<\/li>\n<li><strong>Livres<\/strong><br \/>\n* La journ\u00e9e de jeu de ZAC (Biogen). (Wallonie)<br \/>\nUne BD explicative pour les enfants atteints de SMA.<\/li>\n<\/ul>\n\r\n        <\/div>[\/vc_column_inner][\/vc_row_inner]\r\n        <div class=\"sd-block-title \">\r\n            <h3 class=\"sd-block-title-htag  marginbottom-30px align-left color-black family-calistoga\r\n            \">\r\n                Lire la suite\r\n                \r\n            <\/h3>\r\n        <\/div>\r\n                    <div class=\"sd-block-page-link marginbottom-30px\">\r\n                        <a class=\"page-link-inner  horizontal white\" title=\"Support g\u00e9n\u00e9ral\" href=\"https:\/\/supportnmd.be\/fr\/0-11-ans\/sante-bien-etre\/support-general\/\"\r\n                        >\r\n                            <img decoding=\"async\" class=\"img-container\" src=\"https:\/\/supportnmd.be\/wp-content\/uploads\/2023\/01\/0-11jaar-uitgelicht.jpg\" \/>\r\n                            <div class=\"content-container\">\r\n        <div class=\"sd-block-title \">\r\n            <h3 class=\"sd-block-title-htag  marginbottom-30px align-left color-black family-calistoga\r\n            \">\r\n                Support g\u00e9n\u00e9ral\r\n                \r\n            <\/h3>\r\n        <\/div>\r\n        <div class=\"sd-block-text  marginbottom-30px\r\n        \">\r\n            <p>En tant que parent, il est important d'avoir des points de contact dans les diff\u00e9rents services de conseil : ils aident les parents \u00e0 \u00e9lever et \u00e0 g\u00e9rer leur enfant handicap\u00e9, ainsi qu'\u00e0 faire face \u00e0 ce handicap.<\/p>\n\r\n        <\/div>\r\n        <div class=\"sd-block-button  marginbottom-0px type-solid color-green align-left\">\r\n            <span href=\"\" title=\"Lire la suite\">Lire la suite<\/span>\r\n        <\/div>\r\n                            <\/div>\r\n                        <\/a>\r\n                    <\/div>[\/vc_column][vc_column width=\u00a0\u00bb1\/6&Prime;][\/vc_column][\/vc_row]<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>[vc_row full_width=\u00a0\u00bbstretch_row_content\u00a0\u00bb equal_height=\u00a0\u00bbyes\u00a0\u00bb bg_color=\u00a0\u00bbbg_white\u00a0\u00bb bg_wave=\u00a0\u00bbwave\u00a0\u00bb css=\u00a0\u00bb.vc_custom_1660139282642{padding-top: 0px !important;padding-bottom: 0px !important;}\u00a0\u00bb][vc_column width=\u00a0\u00bb1\/3&Prime; 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