He kīnā ko ke keiki

ʻO ka moeʻuhane o nā mākua no ke keiki maikaʻi loa i kekahi manawa ua haki ke aʻo lākou i ko lākou kīnā. Akā naʻe, i kēia lā, ʻaʻohe mea hiki ke hoʻokō. A laila, i mua o ke aloha o ke keiki, hiki i kekahi mea!

Noho me kahi keiki ʻokoʻa

ʻO kēlā me kēia mea liʻiliʻi i hānau ʻia, a me nā mea kīnā ʻole i loaʻa iā ia, ʻo ia ka naʻau e ʻōlelo ma luna o nā mea a pau. No ka mea, ʻoiai nā pilikia āpau, ʻaʻole pono mākou e poina i ka mea nui: ʻO kahi keiki kīnā ma mua o nā mea a pau, e ulu i nā kūlana maikaʻi loa, ke aloha o kona mau mākua.

ʻIke ʻia a ʻaʻole paha ma ka hānau ʻana, ʻoluʻolu a koʻikoʻi paha, ʻo ke kino kīnā o ke keiki he pilikia ʻeha ia no ka ʻohana, a ʻoi aku ka ʻoiaʻiʻo inā e hoʻolaha koke ʻia ka maʻi.

ʻO ka pēpē kīnā, kahi manaʻo weliweli o ka pono ʻole

I nā hihia āpau, ka a laila, ua lanakila nā mākua e ka manaʻo o ka pono ʻole a me ka hoʻomaopopo ʻole. Manaʻo lākou i ka hewa no ke kīnā o kā lākou keiki a paʻakikī ke ʻae. ʻO ia ka haʻalulu. Ke hoʻāʻo nei kekahi e lanakila i ka maʻi ma o ka ʻimi ʻana i kahi hopena e lanakila ai ka ʻeha, hūnā kekahi no nā pule a i ʻole… lōʻihi.

ʻO Dr Catherine Weil-Olivier, ke poʻo o ka General Pediatrics Department ma Louis Mourier Hospital (Colombes), e hōʻike ana i ka paʻakikī i ka hoʻolaha ʻana i ke kīnā a me ka ʻae ʻana na makua:

Wahi a kekahi makuahine iā mākou penei:

ʻO ka haʻihaʻi ʻana i ka noho kaʻawale a me ka ʻeha hiki ke mahalo iā nui nā hui e kākoʻo ana i nā mākua a hakakā e hōʻike a ʻike ʻia iā lākou iho. Mahalo iā lākou, hiki i nā ʻohana e noho like ana i kēlā me kēia lā ke kaʻana like i ko lākou hopohopo a kōkua kekahi i kekahi. Mai hoʻokaʻulua e hoʻokaʻaʻike iā lākou! ʻO ka launa pū ʻana me nā ʻohana ʻē aʻe e hele nei i ka mea like e hiki ai iā ʻoe ke wāwahi i kēia manaʻo o ka hoʻokaʻawale ʻia, ʻaʻole e manaʻo hou ʻole, e hoʻohālikelike i kou kūlana me nā hihia koʻikoʻi i kekahi manawa a e kau i nā mea i ke kuanaʻike. Ma kekahi hihia, e olelo.

ʻO ke kino kīnā o ka pēpē i kēlā me kēia lā

ʻO ke ola o kēlā me kēia lā i kekahi manawa e lilo i hakakā maoli no nā mākua, ka poe i kaawale pinepine.

Eia nō naʻe, aia kekahi mau mākua, ʻoiai e hoʻokele ana i kā lākou keiki liʻiliʻi i ke kula, e ʻakaʻaka mau ana ko lākou mau maka. ʻO kēia ka hihia no nā mākua o Arthur, kahi Down's Syndrome. Pīhoihoi ka makuahine o kekahi o kāna mau hoa liʻiliʻi: 

No ka haʻaheo o nā mākua o Arthur i ka hiki ke lawe i kā lāua keiki i ke kula e like me nā keiki ʻē aʻe, a ua ʻae i ka hemahema o kā lāua keiki liʻiliʻi.

Ua wehewehe ka haku wahine ʻōpio ʻo Arthur:

No laila, e like me ia, hiki i kāu pēpē ke hele i ke kula, inā hiki i kona hemahema, a e hahai i ke kula maʻamau me, inā pono, nā hoʻonohonoho e like me ka hoʻokumu ʻana. Hiki i ke kula ke hapa. He kūpono kēia no ka mea liʻiliʻi me ka maʻi Down, e like me kā mākou i ʻike ai a i ʻole no kahi keiki e loaʻa ana i ka hemahema o ka ʻike a i ʻole ka lohe.

He pēpē kīnā: he aha ka hana a nā kaikunāne a me nā kaikuahine?

ʻO ka makuahine o Margot, ʻo Anne Weisse e kamaʻilio e pili ana i kāna kaikamahine liʻiliʻi maikaʻi, i hānau ʻia me ka cerebral hematoma a ʻaʻole paha e hele me ka ʻole o kahi hāmeʻa:

Inā hoʻoikaika kēia hiʻohiʻona, He mea maʻamau ka mālama ʻana o nā kaikunāne i kā lākou keiki kīnā, a i ʻole ka pale ʻoi aku. A he aha ka mea maʻamau? Akā e makaʻala, ʻaʻole ia he manaʻo ʻaʻole mālama ʻia nā kaikunāne a me nā kaikuahine nui. Inā makemake ʻo Pitchoun e monopolize i ka manaʻo a me ka manawa o Māmā a Pāpā paha, pono nō hoʻi e hāʻawi i nā manawa kūikawā i nā keiki ʻē aʻe o ka ʻohana. A ʻaʻohe kumu o ka hūnā ʻana i ka ʻoiaʻiʻo iā lākou. ʻOi aku ka maikaʻi e hoʻomaopopo koke lākou i ke kūlana. ʻO kahi ala e hiki ai iā lākou ke ʻae maʻalahi i ke kīnā o ko lākou kaikaina a i ʻole ke kaikuahine a hilahila ʻole.

E hoʻoikaika pū iā lākou ma ka hōʻike ʻana iā lākou i ka hana pale e hiki ai iā lākou ke pāʻani, akā ma ko lākou pae, ʻoiaʻiʻo, i ʻole ia he mea kaumaha loa iā lākou. ʻO kēia ka mea a Nadine Derudder i hana ai:"Ua hoʻoholo mākou, me kaʻu kāne, e wehewehe i nā mea a pau iā Axelle, ke kaikuahine nui, no ka mea he mea nui ia no kāna kaulike. He kaikamahine liʻiliʻi maikaʻi ʻo ia i hoʻomaopopo i nā mea āpau a hāʻawi pinepine iaʻu i nā haʻawina! Aloha ʻo ia i kona kaikuahine, pāʻani pū ʻo ia me ia, akā ʻike ʻole ʻia ʻo ia e ʻike ʻole i kona hele ʻana. No ka manawa e holo maikaʻi ana nā mea a pau, he mau hoa a ʻakaʻaka pū lākou. Hoʻonui ka ʻokoʻa, ʻoiai inā paʻakikī loa ka ʻae ʻana i kekahi manawa. 

Keiki kīnā: mālama i ka pilina ʻohana

ʻO Dr Aimé Ravel, ka pediatrician ma ka Jérôme Lejeune Institute (Paris), ke koi nei i kahi ala e ʻae ʻia i ʻae ʻia. “ʻOkoʻa ka hoʻokokoke mai ke keiki a ke keiki no ka mea ʻokoʻa ka ulu ʻana o kēlā me kēia kanaka, akā ʻae like nā mea a pau ma kahi ʻano: ʻO ke kākoʻo ʻohana i ka wā ma mua, kūpono loa mai ka hānau ʻana. "

Ma hope aku, i ko lakou nui ana, ʻike mua nā keiki me ke kino kīnā i ko lākou ʻokoʻa no ka mea, hoʻohālikelike maoli lākou me nā mea ʻē aʻe. ʻO nā keiki me Down's Syndrome, no ka laʻana, hiki ke hoʻomaopopo mai ka makahiki ʻelua ʻaʻole hiki iā lākou ke hana i nā mea like me kā lākou mau hoa pāʻani. A nui ka poʻe i pilikia. Akā ʻaʻole kēia he kumu e ʻoki ai i ka pēpē mai ka honua o waho, ma ke ʻano. ʻO ka loaʻa ʻana o ka pilina me nā keiki ʻē aʻe e ʻae iā ia ʻaʻole e manaʻo i ka haʻalele a kaʻawale paha, a ʻo ke kula, e like me kā mākou i ʻike ai, he mea maikaʻi loa ia.

ʻO Prof. Alain Verloes, geneticist ma Robert Debré Hospital (Paris), hōʻuluʻulu maikaʻi a hoʻolālā i kēia keiki i ka wā e hiki mai ana: "ʻOiai ka ʻokoʻa a me ka ʻeha o kēia keiki, hiki iā ia ke hauʻoli i ke aloha o kona mau mākua a me ka ʻike ʻana, ma hope aku, aia kona wahi i loko o ke kaiāulu. Pono ʻoe e kōkua i kāu keiki e ʻae iā ia iho a me ka manaʻo e ʻae ʻia a aloha ʻia ".

Mai nīnau nui iā Baby

I nā hihia āpau, ʻAʻole maikaʻi ka makemake e hoʻoulu i ka pēpē i nā koina āpau a i ʻole e nīnau iā ia i nā mea hiki ʻole iā ia ke hana. mai poina ia mea ʻo kēlā me kēia keiki, ʻoiai "maʻamau", aia kona mau palena.

Ua ʻoi aku ka maikaʻi o ka wehewehe ʻana o Nadine ma mua o kekahi ma ke kamaʻilio ʻana e pili ana i kāna liʻiliʻi ʻo Clara, e loaʻa ana i ka maʻi lolo, nona ke ola i hoʻopaʻa ʻia e nā hui physiotherapy, orthoptics ...: "Aloha au iā ia, akā ʻike wau i loko o ia wale nō ka hemahema, ʻoi aku ka ikaika ma mua oʻu. No laila, liʻiliʻi iki aku kaʻu kāne a haʻalele iaʻu i koʻu pupule. Akā, i kekahi lā, i kona hele ʻana i waho e hele wāwae, lālau akula ʻo ia i ka lima o Clara a hoʻoluliluli māmā iā ia e pāʻani. A ma laila, hoʻomaka ʻo ia e ʻakaʻaka me ka leo nui !!! Ua like ia me ka uila! No ka manawa mua aʻu i ʻike ai i kaʻu pēpē, ʻakaʻaka kaʻu kaikamahine liʻiliʻi a ʻaʻole au i ʻike hou i kona hemahema. Ua ʻōlelo au iaʻu iho: "ʻakaʻaka ʻoe, ʻo kaʻu keiki ʻoe, ua like ʻoe me kou kaikuahine, nani ʻoe ..." A laila hoʻōki wau i ka hoʻoluhi ʻana iā ia i hiki ai iā ia ke holomua a lawe wau i ka manawa e pāʻani pū me ia. , e apo aku iā ia…”

E heluhelu i ka waihona ma nā mea pāʻani no nā keiki me ke kino kīnā

Makemake ʻoe e kamaʻilio ma waena o nā mākua? E hāʻawi i kou manaʻo, e lawe mai i kāu hōʻike? Hui mākou ma https://forum.parents.fr.