Anne-Catherine, mother of Iris, 18 years old
List the difficulties? Easy, there are so many!
And when you're faced with a blank page, you get discouraged. Where should you start? Which ones to mention? How do you sort them? How do you sort out the MYT1L stuff from the teenage stuff?
It's not easy to sort it all out!
Let's talk about the day-to-day life of Iris, aged 18
I think the first thing that comes to mind is how difficult it is to talk to Iris. If I call out to her, she immediately tenses up, depending on what she's doing.
Let me explain. Since the start of the new school year, Iris is no longer at school, she's got her CAP PSR (Production Service and Catering) and so we're looking for the next step... so her activity is the sofa with the telephone!
It's incredible, but at the same time it's really complicated to do anything else! So she tenses up because she knows that either someone's going to ask her to do something (make a green salad, set the table, put the dishwasher away) or she's going to have to interrupt the game she's currently playing and she might not be able to beat her records! So you get someone who grumbles, who pulls a face a hundred feet long, when it's not a tantrum that explodes.
Let's talk about lack of initiative! You have to ask for everything.... Tidy your room, make your bed, tidy the bathroom after spending a good hour there!
And what about services rendered at home? It's as if they don't exist! Put away the knickers and socks that are in a special bag when they come out of the tumble dryer, and once a week or two, sort them out and divide them between the 10 individual lockers. If you ask for a favour, the tendency to forget is very strong!
The word ‘forget’ is a problematic one that generates anger, with scratches on the face or ‘crumpling’ of the temples of glasses. This summer 2 pairs of glasses were damaged in 2 months, and again at the beginning of December, so as we only had an appointment with the ophthalmologist at the beginning of January Iris didn't have any glasses for a while.
On the other hand, I have to admit that Iris knows how to make her own dinner if we don't take the initiative.
And I have to admit that we didn't suffer too much at night. Iris hasn't always slept well, she sometimes screams at night, but either we don't always hear her (maybe her brothers and sisters have told us) or she goes back to sleep quite easily and I can't say that's really been a problem for us.
Let's talk about the new chapter in her life: professional integration
The difficulties of finding a job. That's the new chapter and we're right in the middle of it. Since July, Iris has had her CAP! What a bargain! So what do you do with a CAP? Well, that's where it gets complicated!
How many places do you know where people with RQTH are welcomed with open arms?
So you look, you grope, you move forward, you wait, you wait a lot and then you rely on your lucky stars.
And when you're not in the business, you make mistakes, you spread yourself too thin, you go off in all directions, at the risk of spreading yourself too thin and wasting a lot of energy, time and patience....
At the same time, we also had the time to observe Iris, and we realised that she was afraid to face the world of work, that her slowness was a problem, and so this enabled us to move forward, to evolve and finally agree to move towards a sheltered or ‘supported’ environment to enable Iris to become more independent.
And then one fine day what we had sown between September and December began to germinate.
On 31 January, Iris took part in a culinary challenge.
Since 17 February, she has been an active participant in an ‘Objectif Reclassement’ scheme run by the Sinclair association and funded by the region.
On 6 March, she was summoned to a socio-professional interview by the MDPH to enable them to rule on an application for an ‘APIPRO’ training course at the Mulhouse rehabilitation centre, an application we had submitted in May 2024, and the summons arrived around 20/01, i.e. 8 months later !!!!!!
That's the situation at the moment.
This time of research, uncertainties and doubts is full of discomfort, with all the frustrations and new adaptations that generate stress and the corollaries that I'll leave you to imagine.
In our case, it's often the time of family meals that crystallises the stress discharges and the time of anger and frustration, and that's a real difficulty that was at its height during the confinement and that led us to ask for help from the CMPP. We were able to have 3-4 family therapy sessions, which helped us a lot by showing us that together we had the resources to get out of the crisis (giving Iris a glass of water, diverting attention, helped by the other siblings, not focusing on Iris, etc.).
Sometimes it's hard to find a place for everyone, a balance for everyone.
Anne-Catherine, mother of Iris, aged 18
March 2025
A little addition to March 2025: LIGHT!
Today's good news! This lunchtime, Iris had a socio-professional interview with the MDPH, after an 8-month wait following her request for an APIPRO placement at the rehabilitation centre. The nurse who received her and is looking after her file told me that we should receive notification at the end of March/beginning of April, and if all goes well Iris will be joining the session starting on 1 September!
The outlook looks brighter, I'm so happy...