Contents
O ka hoolaha ana o ʻO ka maʻi maʻi o Down i ka wā hāpai a i ka hānau ʻana, hōʻike pinepine nā mākua o nā keiki me Down's Syndromeka manaʻo like o ka haʻalele ʻana a me ka hopohopo i ka hoʻolaha ʻana o ka hemahema. Ke holo nei nā nīnau he nui ma ko lākou poʻo, ʻoiai inā ʻaʻole lākou i kamaʻāina me Down's syndrome, i kapa ʻia hoʻi Down syndrome : he aha ke degere o ka hemahema e loaa i ka'u keiki? Pehea ka ʻike ʻana o ka maʻi iā ia iho i kēlā me kēia lā? He aha kona hopena i ka hoʻomohala ʻana, ka ʻōlelo, ka pilikanaka? He aha nā hale e huli ai e kōkua i kaʻu keiki? Loaʻa i ka Down's Syndrome kekahi hopena i ke olakino o kaʻu keiki?
ʻO nā keiki pono e hahai ʻia a kākoʻo nui ʻia
ʻOiai ka nui o nā poʻe me Down's Syndrome e loaʻa i kahi kūlana kūʻokoʻa i ka wā o ke kanaka makua, a hiki i kahi manawa hiki ke noho hoʻokahi, pono i kahi keiki me Down's Syndrome ka mālama kūikawā. e lilo, ma hope, e like me ka hiki.
Ma ka pae kino, hiki i ka trisomy 21 ke hoʻoulu i ka maʻi puʻuwai hānau, a i ʻole ka puʻuwai puʻuwai, a me ka hoʻoheheʻe ʻana. Inā emi pinepine kekahi mau maʻi i ka trisomy 21 (no ka laʻana: arterial hypertension, cerebrovascular maʻi, a i ʻole nā maʻi koko paʻa), Hoʻonui kēia chromosomal abnormality i ka pilikia o nā maʻi ʻē aʻe e like me hypothyroidism, epilepsy a i ʻole sleep apnea syndrome.. No laila, koi ʻia kahi nānā lapaʻau piha ma ka hānau ʻana, e lawe i ka waiwai, akā ʻoi aku ka pinepine i ka wā o ke ola.
E pili ana i ka hoʻomohala ʻana i nā mākau kaʻa, ka ʻōlelo a me ke kamaʻilio ʻana, koi ʻia ke kākoʻo e kekahi mau loea, no ka mea e hoʻoulu ʻia ke keiki a kōkua iā ia e hoʻomohala e like me ka hiki.
No laila, ʻo ka lāʻau lapaʻau Psychomotor, physiotherapist a i ʻole ka ʻōlelo ʻōlelo he poʻe loea e ʻike mau ai ke keiki me Down's Syndrome i mea e holomua ai.
Nā CAMSP, no ke kākoʻo pule
Ma nā wahi a pau o Farani, aia nā hale hana kūikawā i ka mālama ʻana i nā keiki mai 0 a 6 mau makahiki me ke kino kīnā, inā paha he poʻe naʻau, kaʻa a me ka noʻonoʻo. Nā CAMSP, a i ʻole nā kikowaena hana medico-social mua. Aia he 337 mau kikowaena o kēia ʻano ma ka ʻāina, me 13 ma waho. ʻO kēia mau CAMSP, i hoʻokomo pinepine ʻia i loko o nā hale o nā haukapila a i ʻole nā kikowaena no nā kamaliʻi liʻiliʻi, hiki ke maʻalahi a i ʻole ka loea i ke kākoʻo ʻana i nā keiki me ke ʻano kīnā like.
Hāʻawi nā CAMSP i kēia mau lawelawe:
- ka ʻike mua ʻana i nā hemahema sensory, motor a noʻonoʻo paha;
- ka mālama ʻana i ka maʻi ma waho a me ka hoʻoponopono hou ʻana i nā keiki me nā hemahema o ka naʻau, kaʻa a me ka noʻonoʻo;
- ka hoʻokō ʻana i nā hana pale kūikawā;
- alakaʻi no nā ʻohana i ka mālama a me ka hoʻonaʻauao kūikawā e koi ʻia e ke kūlana o ke keiki i ka wā kūkākūkā, a i ʻole ma ka home.
ʻO ka pediatrician, physiotherapist, speech therapist, psychomotor therapist, nā kumu aʻo a me nā psychologists nā ʻoihana like ʻole i komo i loko o kahi CAMPS. ʻO ka pahuhopu ka paipai ʻana i ka hoʻololi ʻana i ka pilikanaka a me ka hoʻonaʻauao ʻana o nā keiki, ʻoiai ke ʻano o ko lākou kīnā. Ma muli o kona hiki, hiki ke hoʻohui ʻia ke keiki i hahai ʻia i loko o kahi CAMSP i loko o ka ʻōnaehana kula, a i ʻole ke kula mua (nā kula hānai, crèche...) maʻamau piha a hapa manawa. Ke ala aʻe ke kula o ke keiki, ua hoʻokumu ʻia kahi Personalized Schooling Project (PPS)., e pili ana i ke kula e hele ai ke keiki. No ka mea e hoʻoikaika i ka hoʻohui ʻana o ke keiki i ke kula, kahi limahana kākoʻo ola kula (AVS) pono paha e kokua i ke keiki i kona ola kula i kela la i keia la.
Loaʻa i nā mākua a pau me ke keiki ma lalo o 6 me ke kino kīnā i nā CAMSPs, me ka pono ʻole e hōʻoia i ke kīnā o ke keiki, a no laila hiki e hoʻopili pololei i ka hale kokoke iā lākou.
ʻO nā hana āpau i hana ʻia e nā CAMSP e uhi ʻia e ka Inikua Ola. ʻO ka CAMPS he 80% kālā e ka Primary Health Insurance Fund, a he 20% e ka ʻAha Kūkākūkā Nui a lākou e hilinaʻi ai.
ʻO kahi koho ʻē aʻe no ka hahai ʻana i kēlā me kēia pule o ke keiki me Down's syndrome ʻo ia hoʻohana i nā loea liberal, i kekahi manawa he koho maʻamau no nā mākua, no ka nele o ka hakahaka a i ʻole nā CAMSP kokoke. Mai kanalua e E kāhea aku i nā hui like ʻole e pili ana i ka trisomy 21, no ka mea hiki iā lākou ke kuhikuhi i nā mākua i nā loea like ʻole ma ko lākou wahi.
ʻO ka mākaʻikaʻi kikoʻī a kūikawā i hāʻawi ʻia e ka Lejeune Institute
Ma waho aʻe o ka mālama ʻana i kēlā me kēia pule, ʻoi aku ka maikaʻi o ka mālama piha ʻana e ka poʻe loea i ka Down's Syndrome e loiloi pono i ke kīnā o ke keiki, e loaʻa i kahi hōʻailona kikoʻī. I Palani, ka Lejeune Institute ʻO ia ka ʻoihana nui e hāʻawi ana i ka mālama piha no ka poʻe me Down's syndrome, a ʻo kēia mai ka hānau ʻana a hiki i ka hopena o ke olaBy he hui lapaʻau multidisciplinary a kūikawā, mai ka pediatrician a i ka geriatrician ma o ka geneticist a me ka pediatrician. Hoʻonohonoho ʻia nā kūkākūkā keʻa me nā loea like ʻole i kekahi manawa, e hoʻomaʻemaʻe i ka ʻike e like me ka hiki.
No ka mea, inā kaʻana like ka poʻe āpau me Down's syndrome i ka "excess of gene", Loaʻa i kēlā me kēia me kona ala ponoʻī e kākoʻo i kēia anomaly genetic, a he nui ka hoʻololi ʻana i nā hōʻailona mai kēlā me kēia kanaka.
« Ma waho aʻe o ka mālama ʻana i nā lāʻau lapaʻau maʻamau, pili paha i kekahi mau manawa o ke ola e loaʻa kahi loiloi piha, e komo pū ana. ʻōlelo a me nā ʻāpana psychometric », Hiki iā mākou ke heluhelu ma ka pūnaewele o ka Lejeune Institute. ” ʻO kēia mau loiloi, ka mea maʻamau e hana ʻia me ka hui pū ʻana me ke kauka haʻi'ōlelo, ka neuropsychologist a me ke kauka, hiki ke hoʻohana no e ʻike i ka hoʻonohonoho ʻana e kūpono i ke kanaka me ke kino kīnā i ka manawa o nā pae koʻikoʻi o kona ola. : ke komo ʻana i ke kula hānai, ke koho ʻana i ka hoʻonaʻauao kula, ke komo ʻana i ka wā makua, ka ʻoihana ʻoihana, ke koho ʻana i kahi kūpono e noho ai, ʻelemakule ... ”Ka me ka neuropsychologique No laila, kūpono loa ia no ke kōkua ʻana i nā mākua e hana i ke koho kūpono e pili ana i ka hoʻonaʻauao ʻana o kā lākou keiki.
« Hoʻokahi hola o kēlā me kēia kūkākūkā, no ka mea he kamaʻilio maoli me ka ʻohana a e hoʻopaʻa i nā maʻi i hopohopo nui i kekahi manawa ", wehewehe ʻo Véronique Bourgninaud, luna kamaʻilio ma ka Lejeune Institute, me ka hoʻohui ʻana" ʻO kēia ka manawa e pono ai e hana i kahi hōʻailona maikaʻi, e hoʻopololei i ka nīnau a me ka hoʻokolohua lapaʻau, e loiloi i nā pono a loaʻa nā hopena paʻa no ka mālama maikaʻi i kēlā me kēia lā. Loaʻa pū kekahi limahana hana e kākoʻo i nā mākua o nā keiki me Down's Syndrome i kā lākou mau hana like ʻole. No Véronique Bourgninaud, ʻO kēia ala lapaʻau e kākoʻo ana i ka hahai ʻana o ka ʻāina me nā CAMSP, a hoʻopaʻa inoa no ke ola a pau, e hāʻawi ana i nā loea Institute a ʻike honua o nā kānaka a me kā lākou maʻi maʻi : ʻike ka pediatrician i ka hopena o nā keiki āna i hahai ai, ʻike ka maʻi maʻi i ka moʻolelo holoʻokoʻa o ka mea āna i hoʻokipa ai.
He hale kūʻokoʻa ka Jérôme Lejeune Institute. No nā poʻe maʻi, ua uhi ʻia nā kūkākūkā e ka Health Insurance, e like me ka haukapila.
Nā kumu a me nā ʻike hou aku:
- http://annuaire.action-sociale.org/etablissements/jeunes-handicapes/centre-action-medico-sociale-precoce—c-a-m-s-p—190.html
- http://www.institutlejeune.org
- https://www.fondationlejeune.org/trisomie-21/