Témoignage : « Nous n’avons pas vu notre fils depuis plus de 2 mois », Marie-Claude, militante CFTC
Référente handicap UD22, Marie-Claude vit difficilement la crise du Covid : elle est privée de Vincent, son fils autiste, confiné dans un établissement spécialisé.
Comment vivez-vous ce confinement ?
Assez mal. J’ai un fils autiste de 39 ans, Vincent, qui est dans un établissement à Paimpol. Moi j’habite à Perros-Guirrec. D’habitude, nous le voyons tous les quinze jours ‒ ce qu’autorise l’ARS ‒, avec mon mari, nous le ramenons à la maison pour le week-end. Nous n’avons pas vu notre fils depuis plus de 2 mois. C’était le 7 mars ! Il me manque, mon loulou. Je veux le voir, le serrer contre moi. Les handicapés sont confinés comme dans les Ehpad : les visites ne sont pas autorisées.
Pouvez-vous communiquer autrement avec lui, grâce aux nouvelles technologies, en visio ?
Nous avons essayé par Skype : il se sauve, la charge émotionnelle est trop forte. Il ne communique pas beaucoup. Mon fils, c’est Rain Man : il connaît énormément de mots, mais n’en utilise que trois ou quatre. Et il a clairement dit « non » quand on lui a reproposé la visioconférence. On essaye bien de l’appeler, mais c’est aussi compliqué. Je veux en profiter pour tirer mon chapeau aux équipes du centre. On parle beaucoup du personnel des Ehpad, mais n’oublions pas ceux qui s’occupent des handicapés. Ils font tout ce qu’ils peuvent pour rassurer les familles, essayent de divertir les patients malgré l’annulation des sorties habituelles. Ils ont été très inventifs. Ils sont extraordinaires.
Comment envisagez-vous la suite, le déconfinement ?
Édouard Philippe a bien précisé que les Ehpad ne seraient pas « déconfinés ». C’est la même chose pour le centre où est Vincent. Ce n’est pas pour tout de suite. Le plus difficile à gérer, outre le manque de partage avec notre fils, c’est l’incertitude. Certains parents âgés ont peur de ne plus jamais revoir leur enfant, et dans le fond de ma tête, j’y pense aussi. Je suis une mère poule, mais je ne sais pas comment gérer la suite. Quand les visites seront autorisées, prendrons-nous le risque de le stresser ? D’habitude, lorsqu’il nous aperçoit, il sait qu’il rentre avec nous. S’il nous voit et que nous ne procédons pas de la même façon, nous allons provoquer une charge émotionnelle trop violente. C’est la même chose pour le voir à travers une vitre. Nous en serions ravis, mais nous ne savons pas comment il pourrait réagir. C’est très difficile.
Est-il depuis toujours dans cet établissement ?
Non. Et c’est un parcours semé d’embûches et très dur que d’avoir un enfant autiste. Il a été « diagnostiqué » avec un retard de développement à l’âge de 3 ans. Nous avons rapidement compris qu’il était autiste. Il est allé en maternelle avec une institutrice exceptionnelle jusqu’à 8 ans, puis a été pris en charge dans un EMP (externat médico-pédagogique) à Stains (93). Mais c’était loin d’être la panacée, c’était le seul autiste. Ensuite, ça a été la galère, nous n’avons pas eu de place dans un centre pendant trois ans ; ce sont mes parents âgés de 80 ans qui le gardaient ! Un adhérent CFTC passé en Belgique nous a sauvés ; il a appris qu’une place était disponible. Vincent y a été admis et y a passé dix ans. Et il est depuis neuf ans à Paimpol. Les autistes sont des personnes géniales. Oui, il peut y avoir des accès de violence, mais ils peuvent aussi être si craquants… Au restaurant, Vincent réussit toujours à avoir deux glaces en dessert, en charmant les serveuses. Même à 39 ans !

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