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C’est un garçon! L’expérience maternelle
Kate Lindley Scheidegger, PhD 30 mars 2017
Les trois messages clefs
l Si vous voulez aider les enfants, il faut aider les parents. Les mères assurent majoritairement la charge quotidienne des enfants.
l La maternité est un apprentissage. Nous n’avons pas d’instinct maternel. Nous vous aimons en partie grâce à l’ocytocine.
l Avoir un enfant avec une différence nécessite un apprentissage supplémentaire.
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Parents
«[P]arents’ concerns, hopes, fears and decisions regarding their babies largely shape the conditions of that individual’s life. [P]arental adaptation to the condition may be the most important factor for determining the child’s quality of life; the question remains to what extent encounters with medical caregivers and current treatment foster their adaptation or hinder it.» Karkazis, K. (2008: 178-9). Fixing Sex: Intersex, Medical Authority, and Lived Experience
Edward, né en décembre 1984
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Klinefelter male l Many men who have Klinefelter
syndrome do not have obvious symptoms. Others have sparse body hair, enlarged breasts, and wide hips. In almost all men the testicles remain small. In some men the penis does not reach adult size. Their voices may not be as deep. They usually cannot father children. But they can have a normal sex life.
l Some boys with Klinefelter syndrome have language and learning problems.
Bruining et al.
l KS is the most common aneuploidy with a prevalence of 1 in 700.
l Only 10% to 25% of expected diagnoses of KS are made before puberty.
l Recommend that all boys with behavioural and cognitive/learning problems be screened before the age of 10 for KS.
Bruining, H., Swaab, H., Kas, M. & Van Engeland, H. (2009). Psychiatric characteristics in a self-selected sample of boys with Klinefelter
Syndrome. Pediatrics (2009) Retrieved from paediatrics.aapublications.org
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l Clinical features (%) of adult patients with Klinefelter syndrome l Small testes (<4–6 mL) - Infertility – Azoospermia
Decreased facial hair - l Decreased pubic hair l Abdominal adiposity l Gynecomastia
Varicose veins Decreased libido and potency
l Decreased muscle strength l The metabolic syndrome l Type 2 diabetes l Osteopenia and osteoporosis l Mitral valve prolapse l Characteristics of developmental profile l Infancy and early childhood : l Delay of the first stages of language l Dyspraxia
Auditory-verbal memory deficits l School-age period : l Moderate to severe difficulty in reading skills, writing, spelling and arithmetic Verri, Mol Hum Reprod, 2010 Wikström, Best Pract Res Clin Endocrinol Metab, 2011
Parcours scolaire
l Difficultés dès le départ en classe enfantine l Logopédie à partir de la première classe en primaire l Classe spécialisée en 3ème primaire l Ecole privée depuis 4ème primaire l 2 ½ ans de bonheur avec une maîtresse en petite classe
(4ème – 5ème – 6ème primaire) l Diagnostique THADA à l’âge de 10 ans, traitement
Ritaline l Echec en 7ème / secondaire (renvoyé de 2 écoles) l Internat en Valais – recommencé avec le programme
6ème , double le 7ème , renvoyé en septembre 2000 l Année de préapprentissage – SGIPA
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Professionnels vus ou consultés avant décembre 2000 1. Dr. R. Bandelier, gynécologue 2. Dr. D. Mottu, pédiatre 3. Dr. M.P. Favre, pédopsychiatre, Service Médico-Pédagogique 4. Dr. Perez Crim, psychiatre, Service Médico-Pédagogique 5. Mme Zwahlen, logopédagogue, Genève 6. Dr. L. Luka, psychiatre 7. M. Jeanneret, psychologue 8. Consultation urologique, HUG 9. Dr. Ch.-A. Haenggeli, neuropédiatre, HUG 10. Dr. V. Desmangeles, neuropédiatre, HUG 11. Dr. C. Aubert, psychiatre FMH, thérapeute de famille 12. Mme C. Tidmarsh, psychologue scolaire 13. Mme Levrat, psychologue scolaire, Collège du Léman 14. Mme de Marcellus, psychologue ASP 15. Mme Steffen, assistante sociale, Service de la Protection de la Jeunesse, Genève 16. Mme B. Schmitt, psychologue-conseillère, Assurance Invalidité, Genève 17. Dr. M. Plesea, dentiste-orthodontiste 18. M. Piguet, inspecteur scolaire, Genève 19. Mme Jacquemet, inspectrice des classes spécialisées, Genève 20. Mme Pellaton, enseignante en classe spécialisée, 3ème primaire, Meyrin 21. Mme Stalder, enseignante en classe spécialisée, 4ème primaire, Meyrin 22. M. E. Rossier, Directeur, Ecole Maya Joie, La Fouly 23. Mme Dugerdil, Directrice, Ecole La Passerelle, Genève 24. Enseignant(e)s dans les écoles publiques et privées : Mme Bavaud, Mme Planche, Mme Iovino, Mme Street, etc
Dessin par Pécub
L’expérience de la mère d’un enfant dit “différent”
Lindley Scheidegger, 2011
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Le jour du diagnostic
“Just having a diagnosis,” one patient said, “means the rest of your life can start.”
Kathryn Montgomery, How doctors think, 2006: 65
“Medical students are taught that there is a diagnosis for every condition, and that every condition has a defined set of
treatment strategies.” Deborah Lupton, Medecine as Culture, 2003: 127
Un nouveau monde s’ouvre
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Ce que j’aurai voulu avoir
l Une explication médicale et compréhensible du diagnostic
l Du soutien d’un groupe de parents d’enfants similaires
l Un psy de l’école thérapie narrative
Ce que j’ai reçu: l Une explication non-
compréhensible l Une interrogation constante
des médecins basée sur leur curiosité (sans bienveillance)
l Aucun groupe de soutien l Une abondance de psys
avec des théories psycho-dynamiques peu aidantes
La recherche sociologique de Preves
« Throughout my research, I have heard stories of powerlessness, violation, reclamation, and personal empowerment. Interview after interview, participants shared stories of feeling scrutinized and sexualised by medical professionals, of being treated as oddities and freaks, of lacking control over their own bodies, and of the resulting shame and secrecy of such experiences. » Preves (2008:9)
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La mère est supposée être un endroit où l’enfant est en sécurité
Personal problems / public issues
« So, when adults encounter a healthy baby with a body that is not ‘easily’ sexed, they may understandably experience an inability to imagine a happy and successful future for that child. … But most parents don’t find a real need to address these questions until years after a child’s birth. … (I)t is my contention that parents and caregivers of intersexed children don’t need to be so concerned about addressing the ‘personal’ troubles of their children either. Rather we should all turn our attention to the ‘public issues’ and problems wrought by unwavering, merciless adherence to sex and gender binarism. » Preves, S.E. (2008:12)
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Judi Herring, MD « Gender Bound » TedXTalk Jacksonville l Our fixation on genitals is so entrenched in
our cultural mindset that it serves as a functional reference to how we relate.
l « Different » is compatible with emotional and psychological well-being.
l https://www.youtube.com/watch?v=TZkcGZrupEo
l https://www.youtube.com/watch?v=TZkcGZrupEo
You’re a mutant
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Disruption of identity
“This disruption of identity occurs whether a person learns of their sexual ambiguity or later in adult life. The reason that learning the ‘truth’ about one’s sex is so jarring because it differs from how they viewed themselves before that moment.” Preves, S.E. (2008)
Parcours après le diagnostic
l Unité de crise pour adolescents UCA, HUG l Centre thérapeutique du jour, SMP l Psychiatrie Belle-Idée, HUG l Tutelle depuis 2003 l Vit de manière autonome depuis novembre 2003 l Rente AI complète l Substitution hormonale commencée à l’âge de
23 ans, suivi par Dr. P. Meyer, endocrinologie HUG
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La construction de l’identité
l « Being labeled as a misfit, by peers, by family members, or by medical diagnosis and treatment, is no doubt a challenge to one’s identity development and stability. »
l « Negotiating identity, one’s basic sense of place and self, is a challenge for many of us, and is potentially far more challenging for people whose sex is called into question. »
l Source: Preves, S. E. (2008: 4-5) Intersex and Identity, The Contested Self
One wish by Lynell Stephani Long “But if I had one wish, this is what I would wish for: I wish my mother had asked more questions, and done some research on her own. I wish she hadn’t taken the doctors for their word, and I wish she had listened to me when I told her what my desires were. I wish she was told that her child being intersex does not reflect on her as parent. Sometimes children are born different than how we have our hearts set. Unfortunately, she put all of her trust in the doctors at the University, and prayed they could turn her ‘son’ into a male. Maybe with more knowledge, patience, and understanding, my mother would have had the tools needed to be a great parent” (Chapter 6, Thoughts from fellow parents and from adults with DSD, ISNA, 2006: 90)
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Les questions pour les parents
l Est-ce que son identité de genre est innée ou acquise?
l Quelle théorie va nous aider? l Qu’est-ce que nous devons faire pour
accompagner notre enfant?
Ce que j’ai fait
l Bachelor en psychologie 2002 (41 ans) l Master en psychologie (2006) l Doctorat en sciences sociales (2009-13) :
The social construction of a mother’s identity amidst the confluence of motherhood discourses
l Formation en thérapie narrative (2010-16) l Création d’une association SAMED –
Soutenir et Accompagner les Mères d’Enfants « Différents » (2016)
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Thérapie narrative
Elle propose une déconstruction des relations de pouvoir dans lesquelles l’individu se sent isolé et enfermé face à son problème, puis la reconstruction d’histoires alternatives dans lesquelles les individus retrouvent une relation avec leurs rêves et leurs aspirations. Un des grands points forts de l’approche narrative est de savoir guider l’individu dans la recherche et la reconnexion avec ses ressources cachées, celles qui n’ont pas été prises en compte au regard de leur histoire.
Deconstructing discourses
l “In whose interests is the discourse operating? l What (and whose) values, beliefs and
concepts are espoused, and what others are neglected?
l What pre-established knowledge or belief systems are drawn upon to create meaning?
l What types of social differences are established or perpetuated?”
Deborah Lupton, Medecine as culture: Illness, disease and the body,
1994:55
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Est-ce que je suis un garçon ou une fille? l Qu’est-ce que tu aimes faire? l Qu’est-ce que tu n’aimes pas faire? l Qu’est-ce que tu fais bien? l Qu’est-ce que tu veux faire quand tu es
grand? l Tu te sens plutôt fille ou plutôt garçon?
C’est quoi, d’être un garçon?
Contacts
l www.samed-association.ch l Soutenir et Accompagner les Mères
d’Enfants “Différents”
l [email protected] 079 626 1586 l www.drkatelindley.ch
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Bibliographie
l Belliger, A. (2014) Gesundheit 2.0: Das ePatienten-Handbuch l Griffin, J. (2016) Parenting a disabled child In Therapy Today, October 2016 l Karkazis, K. (2008: 178-9). Fixing Sex: Intersex, Medical Authority, and
Lived Experience l Lindley, K. (2013) The social construction of a mother’s identity amidst the
confluence of motherhood discourses. http://www.taosinstitute.net/kate-lindley-scheidegger-dissertation
l Lupton, D. (1994) Medecine as culture: Illness, disease and the body l Preves, S.E. (2008) Intersex and Identity: The Contested Self l Shakespeare, T. (2006) Disability Rights and Wrongs l Thomas, T. Shut That Kid Up, Motherhood as Social Dislocation, Journal of
the Association for Research on Mothering, Vol. 3, No 1
