Vertaistuki, tuo arjen voimavara erityislasten perheissä. Ihmiset, jotka ymmärtävät ja tietävät puolesta sanasta mitä tarkoitat. Nuo arjen sankarit.
Meille monelle tätä on Spesiaalien kerho. Kerho, jonka keulakuvana on meistä vanhemmista monen kerhotätinä toiminut teräsmummu. Tuo hersyvän naurun, ilon ja vilpittömyyden jakaja.
Spesiaalit on suhteellisen pieni ja tiivis porukka, joka kerhoilee, retkeilee ja ennen kaikkea tukee toisiaan.
Spesiaalit ei silti ole mikään suljettu ryhmä, vaan kaikille erityisten perheille avoin paikka.
Kerhossa diagnoosit vilisevät ja ovat kirjoltaan yhtä värikkäitä kuin kukat kesän niityillä tai lahjat joulukuusen alla. Silti jokainen lapsi on yksilö, ihminen, tasavertainen – täällä kukaan ei ole diagnoosilista, täällä kukaan ei ole yksin.
Huolet vanhempien sydämissä ovat pieniä tai isoja. Miten määritetään iso tai pieni huoli? Jokainen huoli on yhtä tärkeä kokoon katsomatta, jokainen huoli on henkilökohtainen. Jokainen vanhempi puolustaa ja hoivaa lastaan täydellä sydämellä, jokainen tuntee huolen omalla koollaan.
Tärkeintä on, ettei vanhemmistakaan kukaan ole yksin. Ketään ei arvostella, ketään ei tuomita.
Käsin kosketeltava on voima, jonka nämä vahvat vanhemmat suuntaavat lastensa hyvinvointiin, hauraimmilla hetkillään tai viimeisillä voimillaan.
Vertaistukea, mutta kenelle? Äidille, isälle, sisaruksille – koko perheelle. Kaikille tavallaan, kuuntelemalla, puhumalla, viittomalla tai millä tahansa tavalla kommunikoimalla, vaikka vain hiljaa vieressä istumalla.
Vertaistuki, siinä ei täytetä hakulomakkeita, ei ole jonoja eikä vuoronumeroita, ei loma-aikojen kiinnioloja, vertaistuki on lähellä aina, kun sitä tarvitset.
Vertaistuen myötä hävisi tunne siitä, että olen yksin. Tunsin kuuluvani joukkoon, olin yksi heistä ilman selittelyitä.
Ystäville tai sukulaisille ei kehtaa keskellä yötä ottaa yhteyttä, mutta vertaistukipalstalla on aina joku valveilla, viimeistään aamulla ovat ensimmäiset tsempit saapuneet.
Vertainen auttaa kestämään tuskan, kun lapsi on leikkaussalissa, osastolla, kuntoutuksessa ja vanhemman sydän huolesta syrjällään. Ilman vertaisia en olisi pärjännyt, heidän kanssaan jaetaan ilot ja surut, voitot ja häviöt.
Vertaisella ei ole sitä ”ammattilista etäisyyttä”, vaan hän istuu samassa veneessä, ottaa kädestä kiinni ja itkee sekä nauraa mukana. Hän kykenee asettumaan toisen erityislapsen vanhemman asemaan yli diagnoosirajojen. Saman kokeneilta saa vastauksia ja hyväksyntää, ei ihmettelyä, taivastelua tai paheksuntaa.
Pääset toisinaan kurkistamaan lapsesi ”tulevaisuuteen”, kun kuulet, millaisia tilanteita muilla on, mitä he ovat kokeneet ja millaisen tien he ovat kulkeneet. Jokaisen tilanne on erilainen ja jokainen kulkee oman polkunsa.
Pahimmassa synkkyydessä se on elinehto: ”Tulevaisuus on, tuokin on selvinnyt, sekin on käynyt nämä asiat läpi, ja se on järjissään täällä kirjoittelemassa.”
Että on joku olkapää, ei kyynärpää. Että on joku joka ymmärtää. Että ei tarvitse selittää. Täällä meillä kaikilla on hyvä olla, saa itkeä, nauraa tai olla hiljaa, aina vieressä on ihminen joka ymmärtää.
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