Angélique shares with us all about Charly from Lyon, France. (Translated into English by Carlie Monnier)
Comment avez-vous choisi le prénom de Charly? (How did you choose the name Charly?)
C’est moi (Angélique) qui ait choisi son prénom car j’aime beaucoup l’acteur Charlie Chaplin. (I (Angélique) chose his name because I really like the actor Charlie Chaplin.)
Trois mots qui décrivent Charly: (Three words that describe Charly:)
Doux, jovial, calme (Gentle, happy and calm)
Comment et quand Charly a-t-il été diagnostiqué avec BBSOAS? (How and when was Charly diagnosed with BBSOAS?)
En Août 2018 par l’équipe génétique de Rouen (76) de la Normandie en France.(In August 2018 by the genetic team at Rouen (76) de la Normandie in France.)
Quelles sont les activités préférées de Charly? (What are Charly’s favorite things to do?)
Piscine, poney, baskin, cinémadifférence, se promener dans des parcs, manger des glaces à la vanille et boire des sodas (Swimming, horseback riding, basketball, ciné-ma différence (Sensory-friendly and disability-friendly films, concerts, theater, opera…. for all people with and without disabilities), walking in parks, eating vanilla ice cream and drinking soda.)
Quelles sont les forces de Charly? (What are Charly’s strengths?)
Charly a un pic de compétence en informatique et il sait nager depuis ses 9 ans. (Charly is skilled at using the computer and he has known how to swim since he was 9 years old.)
Quels sont les aspects les plus difficiles et gratifiants d’élever un enfant avec BBSOAS? (What are the most challenging and rewarding aspects of raising a child with BBSOAS?)
Charly a besoin de surveillance et d’aide humaine pour palier son manque d’autonomie, notamment pour la propreté non acquise où je dois changer sa couche plusieurs fois par jour, l’aider à se laver, s’habiller, lui préparer à manger, lui couper ses aliments, lui tenir la main pour se promener et le guider …et je suis fière que Charly ait réussi à apprendre à lire et à écrire avec l’ordinateur, il a pu être scolarisé en milieu ordinaire avec une Avsi jusqu’à ses 10 ans, puis à la maison par le Cned avec moi jusqu’à 20 ans. Il arrive à s’amuser dans des sports adaptés et même à faire des compétitions en natation accompagnée avec moi dans lesquelles il a gagné quelques médailles.
(Charly requires surveillance and assistance with independent living skills such as toileting and changing his diaper several times a day, dressing, meal preparation, cutting his food, holding his hand to assist with walking and guiding him…I am proud of Charly because he has learned to read and write using the computer and he educated in a mainstreamed environment with an aide until he was 10 years old. After that he was educated at home by me through the program CNED (distance-learning organization in France) until he was 20 years old. He enjoys adapted sports including participating in swimming competitions where he has won several medals.)
Quel espoir avez-vous pour l’avenir de Charly? (What is the hope you have for Charly’s future?)
Que Charly garde son sourire et sa joie de vivre ! (That Charly keeps his smile and his joy for life!)
Carlie is the Vice President of the Board of Directors for the NR2F1 Foundation, a registered 501(c)(3) non-profit organization dedicated to those living with rare mutations on the Nr2f1 gene.
With a B.S. in Special Education and a M.S. in Counseling, Carlie has worked at EPU Children’s Center as a Resource Specialist serving parents of children living with disabilities and then directed a parent leadership group for disability advocacy through storytelling and public speaking.
Carlie lives with her husband Jeff and their two daughters, one of whom has the rare Nr2f1 gene mutation, in Royal Oak, Michigan. She wants all Nr2f1 families whose lives have changed dramatically to know they are not alone.
