{"id":21843,"date":"2020-04-29T13:08:54","date_gmt":"2020-04-29T11:08:54","guid":{"rendered":"https:\/\/www.fundacioires.org\/?p=21843"},"modified":"2022-04-25T11:11:35","modified_gmt":"2022-04-25T09:11:35","slug":"autisme-un-mon-per-descubrir","status":"publish","type":"post","link":"https:\/\/www.fundacioires.org\/ca\/autisme-un-mon-per-descubrir\/","title":{"rendered":"Autisme: un m\u00f3n per descobrir"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">Etimol\u00f2gicament, el terme\n\u201cautisme\u201d t\u00e9 el seu origen en l\u2019Antiga Gr\u00e8cia, d\u2019on la seva arrel \u201cauto<em>\u201d<\/em> -de <em>autos<\/em>&#8211; es refereix a &nbsp;all\u00f2\npropi, a un mateix. El significat del terme es podria definir com tancar-se en\ns\u00ed mateix, \u201censimismar-se\u201d o entotsolar-se. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Es tracta d\u2019<strong>un trastorn que implica una forma diferent\nd\u2019estar, de viure i de sentir el m\u00f3n<\/strong>. El trastorn de l\u2019espectre autista es\nmanifesta aviat, habitualment sempre abans dels tres anys, tot i que no\ns\u2019identifica fins mesos o anys despr\u00e8s. Els casos de menys afectaci\u00f3 o aquells\namb nivells cognitius normals o superiors a la mitjana freq\u00fcentment no\ns\u2019identifiquen fins l\u2019edat escolar. Tenir coneixement dels signes d\u2019alarma des\ndel naixement de l\u2019infant ens ajudar\u00e0 a millorar el seu pron\u00f2stic i fer\nl\u2019acompanyament que necessita la fam\u00edlia.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">La Fundaci\u00f3 IRES t\u00e9\ndelegada la gesti\u00f3 del Servei d\u2019Adopcions d\u2019Infants amb Necessitats Especials per\npart de l\u2019Institut Catal\u00e0 de l\u2019Acolliment i l\u2019Adopci\u00f3 (ICAA) des de l\u2019any 1998.\nQuan parlem de les necessitats especials d\u2019aquests infants, parlem de qu\u00e8\npresenten unes dificultats i unes patologies que fan m\u00e9s dif\u00edcil la seva\nadopci\u00f3. Si b\u00e9 l\u2019adopci\u00f3 sempre comporta un cert nivell d\u2019incertesa, en les\nnecessitats especials aquesta incertesa \u00e9s m\u00e9s rellevant. Entre aquestes\nnecessitats especials, tenim infants que presenten el trastorn de l\u2019espectre\nautista.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">L\u2019Equip t\u00e8cnic del\nservei, format per tres disciplines (psicologia, educaci\u00f3 social i treball\nsocial) prepara les fam\u00edlies que fan demanda d\u2019una adopci\u00f3 d\u2019un infant amb\nnecessitats especials. Es tracta de fam\u00edlies especialment sensibilitzades a les\nnecessitats especials i han de fer front al que pugui comportar el nivell\nrellevant d\u2019incertesa que presenta un infant amb necessitats especials.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">En el cas que la fam\u00edlia\ns\u2019ubiqui en un perfil d\u2019infant amb TEA, ha de tenir, primer, coneixement\nd\u2019aquesta realitat i per aix\u00f2 la derivem a un centre especialitzat que coneix i\ntracta aquest trastorn, com ara el Centre de formaci\u00f3 i tractament Carrilet,\nper tenir un assessorament adequat. Paral\u00b7lelament explorem una s\u00e8rie de capacitats\nque considerem imprescindibles per adoptar un infant amb aquestes\ncaracter\u00edstiques. Capacitats com la flexibilitat psicol\u00f2gica, la bona gesti\u00f3\nemocional o l\u2019adequada xarxa de suport entre d\u2019altres.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">El coneixement de les\nnecessitats per part de la fam\u00edlia adoptiva, la seva capacitat de toler\u00e0ncia a\nla frustraci\u00f3, la seva estabilitat emocional, el seu desig d\u2019estimar al seu\nfill tal com \u00e9s sense crear-ne falses expectatives, una relaci\u00f3 de parella que\ncobreixi les necessitats de suport, ajut i nutrici\u00f3 emocional, la seva\ncapacitat de demanar ajut o suport quan sigui necessari\u2026 Tot aix\u00f2 s\u00f3n requisits\nb\u00e0sics per garantir un bon pron\u00f2stic.&nbsp; <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Per con\u00e8ixer-ne m\u00e9s, ens\nha semblat interessant poder mostrar directament l\u2019experi\u00e8ncia d\u2019una fam\u00edlia\ndel nostre servei que ha realitzat l\u2019adopci\u00f3 d\u2019un infant diagnosticat de\nTrastorn de l\u2019Espectre Autista. &nbsp;Presentem\nel seu testimoni com a una experi\u00e8ncia que mostra que apropar-se al m\u00f3n de\nl\u2019autisme \u00e9s possible. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>\u201cSegurament ja sabreu on comencem aquest cam\u00ed. Est\u00e0vem aturats, un davant de l&#8217;altre, mirant-nos, i sab\u00edem que un cam\u00ed es tancava. No an\u00e0vem a poder tenir fills biol\u00f2gics i, aqu\u00ed, en aquest moment, ens preguntem si tot l&#8217;esfor\u00e7 que haur\u00edem de fer per tenir un fill biol\u00f2gic realment valia la pena, si era el nostre dest\u00ed portar nens al m\u00f3n o si an\u00e0vem a ser completament feli\u00e7os sent dos. <\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>Ens vam mirar i vam saber que ser\u00edem feli\u00e7os, que el\nnostre amor va m\u00e9s enll\u00e0 d&#8217;aix\u00f2, i en aquest moment vam tenir la certesa que\nELL\/ELLA arribaria a les nostres vides per complementar-nos i formar el nostre\ntot.<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>Vam investigar, vam escoltar, ens vam escoltar i q\u00fcestionar; ens vam posar al l\u00edmit, i en aquest mar d&#8217;informaci\u00f3, \u00a0vam trobar les ADOPCIONS ESPECIALS. He de dir que, per la meva feina, ja sab\u00edem el que ens esperava i s\u00ed, \u00e9s m\u00e9s dur; s\u00ed, \u00e9s m\u00e9s dif\u00edcil; s\u00ed, \u00e9s m\u00e9s comprom\u00e8s. Per\u00f2 val la pena. Aqu\u00ed va comen\u00e7ar aquesta aventura d\u2019endinsar-nos, encara m\u00e9s, en el m\u00f3n de la discapacitat.<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>Tots els camins ens van portar a plantejar-nos els\ndiferents tipus de discapacitat. Uff! \u00c9s dif\u00edcil decidir aix\u00f2 si o aix\u00f2 no,\nper\u00f2 cal ser realistes amb el que estem disposats a afrontar. Aix\u00f2 \u00e9s\nFONAMENTAL: ser sincers amb nosaltres mateixos, amb la treballadora social, amb\nla psic\u00f2loga, amb l&#8217;educador, amb tots aquells que et q\u00fcestionen els motius que\net van portar a aquest punt, si ho fas pels motius correctes&#8230; Perqu\u00e8 \u00e9s\nNECESSARI que s\u00e0piguen que aix\u00f2 no \u00e9s f\u00e0cil.<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>I una de les discapacitats que vam contemplar va ser l\u2019autisme.\nVam preguntar a psic\u00f2legs, psicopedagogs, vam parlar amb persones meravelloses\nque ens miraven amb &nbsp;els ulls desorbitats\nper la sorpresa que estigu\u00e9ssim disposats a ficar-nos en aquest cam\u00ed. Vam mirar\nv\u00eddeos de fam\u00edlies que viuen amb autisme; vam anar a centres especialitzats.\nEns pregunt\u00e0vem quina vida portaria, si \u00e9rem capa\u00e7os de tolerar la\ndiscriminaci\u00f3 (cada vegada menys) que patiria el nostre fill\/a, si \u00e9rem capa\u00e7os\nde posar-li veu.<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>Despr\u00e9s de tot aix\u00f2, ens vam adonar que <strong>no importava el tipus de discapacitat, sin\u00f3\nque importa, i molt, el punt de connexi\u00f3 que tindria amb nosaltres<\/strong>, amb el\nnostre m\u00f3n, amb la nostra hist\u00f2ria. I aqu\u00ed arribem &#8230;<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>Autisme. El nostre petit t\u00e9 trets autistes, retard en el desenvolupament del llenguatge i no s\u00e9 quantes coses m\u00e9s. En el proc\u00e9s d&#8217;idone\u00eftat vam haver de llegir molt sobre el tema, veure v\u00eddeos, escoltar testimonis, buscar ajuda per a saber de qu\u00e8 es tractava&#8230; Perqu\u00e8 \u00a0l\u2019autisme fa por, i no est\u00e0 malament tenir por, perqu\u00e8 la por et fa reaccionar i buscar, adquirir coneixements, i el coneixement et dona les eines per combatre aquestes pors, saber que la persona que m\u00e9s vols al m\u00f3n ho pateix, et fa perdre tot indici de l\u00f2gica en la vida i en cap cas la vols veure patir.<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>Qu\u00e8 dir-vos? \u00c9s dolor\u00f3s pensar que el nostre fill encara no pronuncia m\u00e9s de 5 paraules i no sabem si algun dia dir\u00e0 alguna cosa m\u00e9s que \u201cmama\u201d i \u201cpapa\u201d. Que estima la lluna per\u00f2 no arribar\u00e0 a ella, o si ni tan sols sabr\u00e0 el que \u00e9s &#8230; O s\u00ed? O que estima amb bogeria les grues i mai podr\u00e0 conduir una d&#8217;elles. O s\u00ed? Tampoc construir\u00e0 el pont m\u00e9s llarg del m\u00f3n. O s\u00ed? O que simplement \u00a0no aconseguir\u00e0 treure\u2019s els mitjons sol. O s\u00ed? \u00c9s un gran interrogant. <strong>Ell \u00e9s aquest gran interrogant que estimem amb bogeria.<\/strong><\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>Per\u00f2 quan veus que \u00e9s feli\u00e7 amb una simple can\u00e7\u00f3 de\nbressol, se t&#8217;obliden tots aquests interrogants i no importen. Se t&#8217;obliden,\nper\u00f2 tamb\u00e9 est\u00e0 clar que entren pors com: quin tipus de vida portar\u00e0 ? Qui en\ntindr\u00e0 cura quan ja no estiguem? Podr\u00e0 cal\u00e7ar-se les sabates sol? Aconseguir\u00e0\nalgun dia perdre-li la por a fer caca o pipi?&#8230; Per\u00f2 tot aix\u00f2 tamb\u00e9 se\nt&#8217;oblida quan et diu &#8220;mama&#8221; o et busca per tirar-se als teus bra\u00e7os.<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>Passem hores davant d&#8217;una obra nom\u00e9s perqu\u00e8 a ell li emociona\nveure les m\u00e0quines treballar i veus els seus ulls meravellosos plens d&#8217;alegria\nnom\u00e9s per poder estar a prop d&#8217;elles. O veus a YouTube els mil dibuixets de Mic\nunes 1.500 vegades, o els dibuixos de tractors o les exposicions de trens en\nminiatura; o les quedades de camions, grues, aplanadores -tot en miniatura, &nbsp;que no sab\u00edem que existien! Vaja, que hem\ndescobert tot un m\u00f3n nou.<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>\u00c9s afectu\u00f3s, obedient, rialler, poruc, protector, alegre,\ntossut, intenta de totes les formes de fer-nos feli\u00e7os i aix\u00f2 ho agra\u00efm perqu\u00e8\nsabem l&#8217;enorme esfor\u00e7 que fa di\u00e0riament. Les nostres fam\u00edlies veuen el raig de\nllum que despr\u00e8n, ens uneix, ens alegra, ens fa plorar del riure, ens fa plorar\nde l&#8217;emoci\u00f3 quan intenta alguna cosa que a ell li suposa un esfor\u00e7 important,\nens fa plorar de frustraci\u00f3 quan intenta, intenta i intenta i no ho\naconsegueix, <strong>per\u00f2 ho veiem, el veiem a\nell, un nen, un nen que est\u00e0 creixent i formant-se, que est\u00e0 creixent dins de\nla nostra fam\u00edlia<\/strong>, que l&#8217;estimem m\u00e9s que a les nostres vides&#8230; \u00c9s aquest\namor incondicional, aquest amor de mare i pare que no sab\u00edem que es pot sentir\nfins que ho vius.<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>Som conscients que ell ve amb molta &#8220;feina feta&#8221;, \u00e9s a dir, ja tenia el diagn\u00f2stic i aix\u00f2 ajuda a avan\u00e7ar molt\u00edssim perqu\u00e8 el <strong>saber quin cam\u00ed \u00e9s l&#8217;indicat ajuda molt a perdre aquesta por<\/strong>. Molts papis pateixen per no saber que li passa al seu petit, nosaltres fem el duel abans, i quan arriba ja sabem quin cam\u00ed prendre, aix\u00f2 \u00e9s molt\u00edssim.<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>Sens dubte, volem agrair a aquestes fam\u00edlies que obren les\nseves cases, el seu cor, i donen la seva vida a aquests petits valents que van\narribar a la vida de la pitjor manera, sent abandonats. Amb la seva ajuda\ncomencen a sentir la calor d&#8217;una llar, GR\u00c0CIES. I a les fundacions, que ens\ndirigeixen en aquest cam\u00ed tan dif\u00edcil: moltes vegades ens posen en situacions\ncomplexes, en les que et donen ganes d&#8217;abandonar, per\u00f2 ens ensenyen que per\npoder arribar a ser els pares que necessita el nostre petit, hem de tenir les\nnostres expectatives molt ben calibrades, sin\u00f3, no aconseguir\u00edem ser felices,\nni ser uns bons pares per a ell.<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong><em>Jordi, Virginia i X.<\/em><\/strong><\/p>\n\n\n\n<figure class=\"wp-block-image\"><img data-recalc-dims=\"1\" loading=\"lazy\" decoding=\"async\" width=\"513\" height=\"877\" src=\"https:\/\/i0.wp.com\/www.fundacioires.org\/wp-content\/uploads\/IMATGE-FAM%C3%8DLIA.jpg?resize=513%2C877&#038;ssl=1\" alt=\"\" class=\"wp-image-21838\" srcset=\"https:\/\/i0.wp.com\/www.fundacioires.org\/wp-content\/uploads\/IMATGE-FAM%C3%8DLIA.jpg?w=513&amp;ssl=1 513w, https:\/\/i0.wp.com\/www.fundacioires.org\/wp-content\/uploads\/IMATGE-FAM%C3%8DLIA.jpg?resize=175%2C300&amp;ssl=1 175w\" sizes=\"(max-width: 513px) 100vw, 513px\" \/><\/figure>\n","protected":false},"excerpt":{"rendered":"<p>Hist\u00f2ria de vida d&#8217;una fam\u00edlia que va adoptar al seu fill a trav\u00e9s del Servei d&#8217;Adopcions d&#8217;Infants amb Necessitats Especials<\/p>\n","protected":false},"author":7,"featured_media":21841,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[26],"tags":[],"class_list":["post-21843","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-histories-de-vida"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - 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