Alix, 32 years old
Extra Vaillants: Alix, can you tell us about yourself?
Alix : I don't know how to talk about myself, I can't do it well.
Extra Vaillants: What would the people who know you well say about you?
Alix : That I'm nice, voluntary. That I have the sense of the effort. That I am also altruistic, maybe too much. I like helping people, I can't help it, but because of my invisible handicap, they sometimes don't understand my motivations. So it can become dangerous for me.
Extra Vaillants: Do you have any hobby?
Alix : I love to read. I've read “Harry Potter”, “La Tresse”, “Les Victorieuses”, “Adapt”… I like going to museums, I like cultural things, cinema. I like going to amusement parks but not too much on high rides, I get dizzy. I like going to the swimming pool where my feet still touch the ground, I don't like putting my head under water. I love to travel. I have been to New York twice. I loved these huge buildings, the little yellow touches everywhere that are the taxis. I took the boat, visited museums and saw a musical: Mary Poppins, the actress swinged on a wire just above our heads! I went to London, Malta, Spain…
Extra Vaillants: Do you still live with your parents?
Alix : Yes, but I'm expecting an answer for an inclusive shared habitat at the end of this month. If the answer is positive I will be able to move in next April/May. It is a project piloted by an association. It is a community of three households. In each house there are 6 people with disabilities and 4 caregivers. Everyone has their studio but we take our meals together, we share activities that are not restrained to the households and their habitants. Disabled people can be unemployed, work in voluntary work, work in ESAT or in an ordinary environment.
Extra Vaillants: What does this project mean to you?
Alix: To be able to do like my brother and my two sisters, to be independent, to fly with my own wings. I don't stay far from my parents, between ten and twenty minutes by car. It suits me well.
My parents are happy. They are part of the inclusive housing project.
Extra Vaillants: What are you currently doing for a living?
Alix : I started an internship in a cafeteria run by people with disabilities and educators and i am very happy about it. Ultimately, the association's project is to open an inclusive restaurant on the model of "happy cafes".
Extra-Vaillants: Can we come back to your background? How did your childhood look like?
Alix : I was told that I was doing a lot of stupid things and that you had to keep an eye on me all the time. One day I locked mum in the garage (laughs). I was having tantrums, I couldn't help it. I learnt how to speak late, I think my first sentence was around 4 years old. I first walked around the age of 2, before I had a lot of trouble because of a big imbalance, I preferred to go everywhere on all fours, it was easier! I was sucking my thumb and it lasted a long time! Until I was ten I think, until I got braces. I was always eating fast and I'm still doing it!
The most difficult for me was sports games, everything related to motor skills, DIY, legos, puzzles, manual activities.
I really liked board games (Qui est-ce? Uno), playmobils. I practiced dancing.
School was a nightmare. I was not helped, not supported. They did not understand me except my teacher of CM2. They made me write despite my dyspraxia. As I succeeded in certain areas or sometimes in an area where I had difficulties, I was told “when she wants, she can”. I have never had an AVS.
Mom has always helped me. I have never been able to do my homework alone.
It was sometimes difficult to see the others with their ease, going to play when I had to do rehabilitation or when I was deprived of recreation because I had to finish copying...
I was followed in CMPP from the age of 4 to the age of 16: cognitive remediation, psychologist, psychomotricity, speech therapy mainly in logico-mathematics.
Despite everything, I am proud of myself for having my technological certificate, a BEPA in personal services in a family and rural home, a CAP in early childhood and a State Diploma in Social Life Auxiliary.
I have always been good in theory, more in French than in mathematics.
However, practice is complicated.
Extra Vaillants: Can you explain your difficulties to us?
Alix : I worked with the elderly and children. I found it difficult to take initiatives, to make certain gestures of care, to follow a fast pace, to process information quickly. There were too many things to do at the same time. I had to quit my job.
The same happened for the driving license, I got the code the first time but never managed to have my driving license, even with an automatic car. There are too many gestures to do, observations to make and attention to have at the same time. I need a TESLA (laughs).
Afterwards I found a job thanks to a local mission in a kindergarden. It was complicated for me, the director saw it but she helped me. She took the steps with me to review my situation at the MDPH, redo the assessments and obtain the status of Disabled Worker.
I was already 25 at that time. I even did carpentry in the CPO (pre-orientation center of the MDPH) when applying for RQTH (Recognition of the quality of Disabled Worker), and AAH (Disabled Adult Allowance) in order to know if I should be directed towards the ordinary environment or in ESAT (Establishment and Services Help by Work).
Today I have a recognition of my handicap up to 80%.
Extra Valiant: Was it during your check-ups and exams that you received the diagnosis of MYT1L syndrome? ?
Alix : I didn't identify as a person with on learning disabilities, and ADD, I felt there was something else, so I thought it might be genetic and I asked my psychiatrist a prescription to go to a genetics center. I was 29 and got the results in 2020 so I was 31 at that time, actually almost 31 because the result was in June and I was born in October.
Extra Vaillants: What are your victories Alix?
Alix : I am proud of all my diplomas, of all my efforts. At the time there wasn't the same help that exists nowadays.
I'm proud to be able to tie my shoelaces on my own (laughs).
I am proud to have testified in front of 300 people within the framework of an association, and I was comfortable.
I am proud to have taken the plane alone twice and without any assistance, the first time was to go to New York and the second to go to London. I even managed to talk a bit english with the customs.
Extra Vaillants: Are you happy Alix?
Alix : When I look at my journey, I tell myself that life is beautiful, that it could have been even more difficult. My hypersensitivity gives me more empathy than others and that makes me happy. Everyone has difficulties, no one manages to do everything they want. I can do a lot of things, even if it's not always easy. It's longer, it takes time but we have to keep hope and have faith in ourselves, we can get there. I am also hypersensitive to noises and smells: I could have been a “nose in perfumery”! When it smells good, it's great, but otherwise… sometimes I'm happy to have a mask on (laughs).
The gaze of others doesn't matter to me much anymore, even though it used to hurt. Now it slips off me like water off a duck's feathers (laughs).
Extra Vaillants: How do you see the future?
Alix : In my house with a job, an activity for sure!
I am followed by a physical and rehabilitation doctor, I will perhaps resume speech therapy to work on auditory memory. I would like to do equine therapy: riding a horse or driving.
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January 2022
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