Audrey, mother of Victor, 5 years old,
illustrates the parent's journeys...

I'm taking the time to write you this testimonial because I know it's important for my son, for the other Extra-Vaillants, for research, for moving the world forward... 

I'd like to thank the Extra-Vaillants for their dedication to the association, which is indeed our ray of hope in this journey full of obstacles and difficulties on a daily basis. 

 

Victor is 5 years old and was diagnosed 1? years ago. Here's a list of the main difficulties we encounter:

 

* Huge financial difficulties

Victor has had to reduce his school hours, which has meant that we've had to take on home childcare. This was a financial drain that we're still paying for today, and I think for many years to come. We don't get enough help to cover his costs. Today he's in an IME, but the hours aren't adapted to a conventional lifestyle (start 9am, end 4.30pm). So we hired an agency, as they are more competent than a traditional nanny to look after Victor. It's late-night care, for less than 30 hours a month, and it's overpriced (+ €1,000).

 

* The rhythm of life between appointments and private life

I'm constantly involved in paperwork, medical appointments and personal life. It's a way of life that we adopt because we have to, but nothing is done to relieve the burden (for example, someone who could accompany and be responsible for going to appointments when the parents can't make a daily medical appointment).  I had to stop working because I was experiencing difficulties at work (fatigue, repeated absences...), which doesn't help with the first point.

 

* Loneliness

Victor is very sensitive to noises, movements and other people around him. He finds it hard to filter what he needs to listen to around him and what he needs to leave to continue his activity. It's very difficult to get out and about, and there are no adapted activities on offer in our town. 

 

* The lack of training for carers of disabled children in our town.

I've attended a number of caregiver forums, but many of them focus on caregivers of elderly parents. Nothing for parents, who suffer greatly from the lack of information, support, accompaniment and training. Our child needs to be involved in practices that go beyond benevolence or “classic” education. As parents, we need to be equipped to provide the best possible support. 

 

* Impact on siblings' lives

Since we don't move around a lot when Victor's at home, we don't have much to do. As a single mother with no family, I can't delegate the burden of activities. 

 

* Lack of information on disability and training for professionals working with children.

Victor is able to attend school in a small group with support adapted to his disorders. He's currently in an IME, where he's resuming his childhood program, since he couldn't keep up with all the noise and movement of his friends. But when he was at school (3 mornings a week), the staff couldn't adapt and didn't feel like it. At several meetings, we tried to get them to understand the advantages of taking Victor in a small group, to avoid the large number of activities we'd already tried... In short, we're running into walls and reproaches... and it's painful. 

 

I think I've covered the main difficulties that can arise with Victor's illness. 

 

Victor is a pleasant little boy to live with, and from time to time we find it hard to contain his frustration, but this has become quite rare and passes quickly. He's very well taken care of because I do everything at once and I've really made sure that his environment is adapted. He has been in an IME since September 2024, in a special TND and TSA program, and has also been followed by the CPO since August 2024. Before that, he was followed by the CAMSPP in Alençon from the age of 1 and a half to 4 and a half. He was also able to get help at school with an AESH and a specialized educator (4.5h/week). 

I got support from the RSVA for his application to the IME. 

February 2025

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