Prader-Willi France held its 25th national day on 15th October 2022, gathering together more than 220 families and professionals.
The theme was self determination under the title “What about my opinion?”.
Two children and two adults with PWS addressed the audience on this topic. You can find below the text of Elias’ presentation translated into English. He spoke very clearly to advocate for the participation of people with PWS in the discussions and decisions that affect their lives. You can watch the video below.
Elias: Hello. My name is Elias I am 21 years old
Audrey: How are you feeling today Elias?
Elias: I feel like you Audrey, totally normal but only next to me, on my shoulders there is Prader-Willi syndrome. I have my limits and then I need help. It is impossible to present my story only briefly. I went to school until the end of the “bac pro” in a regular curriculum with AESH and SESSAD (French support for people with disabilities). I am currently without an activity, waiting for a place to work in ESAT (protected workshop) and a place in a home.
So today I want to present you two main points that I really care about. I am addressing both parents and politicians. Let go of your children, stay alert. Your children have great abilities. Trust them.
I’ll tell you how it happened for me. When I was 12 years old , I would get up at night and eat groceries stored in the kitchen. We set up a camera with a motion detector in the kitchen. It didn’t work but we made the decision to lock the fridge and cupboards. It gave me peace of mind and allowed me to live more serenely and remain independent in my home.
My parents were also relieved and are going to work. I can stay home alone but I prefer to be active. My parents encourage me to find activities outside the home such as theatre, pottery or hiking. I listen to France Inter radio daily and I have manual activities like puzzles to keep my mind busy at home.
During my outdoor activities, when I am invited to something such as a birthday party or a farewell party, I inform my parents and the educators so that I can participate. For example, during an internship in an ESAT, I was invited at the last minute to a farewell party. I had not been able to inform my parents so I was unprepared and I decided to stay away. This example shows that I need a boundary indication that my parents give me or educators.
Explaining the syndrome to the person. For me, it helped me to manage myself. I understood better the importance of physical activity for example. Listen to the person, involve him in decisions that are made for his future and encourage him to rely on outside people or professionals.
Now I’m going to go into topics to pass a message to politicians. Thank you Mr. Piveteau (M. Piveteau is a high official who introduced the PWF National Day) for staying in the room.
First of all I want to talk about the PCAH human assistance assessment grid – I applied and I found that there is a question that is very difficult to answer by yes or no: Can you eat alone? Uh yes, I can coordinate the actions to consume the food that has been served. Yes, I know how to bring food to my mouth. But I don’t have a sense of quantity. I need human help to help me measure out. I don’t want to be supervised, I just need a benevolent eye. For example, in high school I found a second “mother hen”, a friend, a classmate who ate her meals with me and when I wanted to go somewhere else she said “no, no, I’m staying here”.
So I suggest the following formulation: do you know how to manage your food? To this question there is only one possible answer: no.
Secondly, as a young adult with a project of autonomy, I would like to open places in France. I am thinking of shared accommodation with supervision and educational support. I prefer an open living space that does not only gather PW people for mutual aid and sharing. I thank you for looking for solutions in France so that we can realize our projects of autonomy as young adults. For my part, if I do not find a solution in France, I will be forced to leave. I know that there are possibilities to be welcomed in Germany.
Finally, I propose cooperation and consultation with the Prader-Willi people. I am available to take up our cause with the government and the deputies. We Prader-Willi people of the 20th (and 21st) century, I think we are rather healthier than our elders, that is why I recognize myself in the expression the new generation and I have hope for this new generation.
Elias, JN Prader-Willi France, Paris 15 October 2022