Valérie, mother of Alice aged 12
“FED UP WITH BEING A DEPENDENT PERSON!
WHERE'S THE RESPECT FOR RIGHTS?”
Alice was diagnosed at the age of 7 and a half.
She had already come a long way in the common law, in the school of the republic, within the framework of the 2005 law on disability and the principles of adaptation and inclusion....
Within this framework of rights, benevolence and support, Alice was supposed to develop her skills and be welcomed in full equality .... WRONG!
Let's talk about schooling, the MDPH, judgments, shortcomings and suffering.
Let's talk about the fact that we're a “dependent person” and everything can explode and be destroyed in an instant.
Let's talk about the weight of responsibility placed on tiny shoulders.
Let's talk about the families we make feel guilty.
WHAT IF, FOR ONCE, WE TALKED ABOUT THOSE ADULTS WHO DON'T RESPECT THE LAW, WHO THINK THEY'RE POWERFUL, BEYOND “IT” - “IT” BEING OUR CHILD!
THEY JUDGE, THEY DECIDE, THEY CONDEMN AND THEY KILL SLOWLY....
Has no one ever measured their impact on an educational trajectory, a life trajectory?
The damage they cause, the doors they close, because “they” know everything before anyone else, before any trial, better than all the teams who follow the child, better than the parents, better than the development of possibilities that nobody measures in our rare pathologies?
Their wrongs are never recognized, and they will never settle any slate.
The system forgets these people, the system keeps only the child's impediments, but impediments as a consequence of what?
Who bears the burden of these incompetent adults?
The CHILD, impacted in his own construction and obviously in his path, his possibilities and his dreams.
I can't take any more of these “it's not their fault, they're not trained” excuses, especially when these teachers are “specialized teachers”!
I can't take any more of these refusals to adapt: “No, I won't do that. No, I don't want that in my class. No, that's the minimum I'll do”. Of these adults who throw your child and his belongings like a heap of misery into the corridor “outside” (to be polite).
I'm fed up with people talking to you about behavior problems when they're largely generated by the adults themselves in their relationship with the child, the adaptations absent....
I'm sick and tired of being asked to be a “second” teacher when that's not her role, her mission or her skills.
I'm fed up with taking my child to the shrink to deal with the violence she receives and the rejection she feels.
I'm sick of seeing her hug me, looking at me and saying “I love you or thank you” because we've worked together, she's passed her exercise, she's clenched her fists and said “bravo Alice” because, damaged, trust becomes almost an unknown...
I'm sick of seeing her possibilities flouted, of seeing her sad...
I'm sick of seeing possible adaptations not put in place, of Alice not being able to benefit from them and show her skills...
I'm fed up with squeezing my buttocks and swallowing bullshit so that it doesn't backfire on her, on us...
I'm tired of apologizing for being here.
I'm fed up with the unequal treatment of files by MDPHs across the country.
I'm fed up with the fact that a file presented by a family is rejected outright, and the same file presented by a health care provider is validated! Who are we kidding?
I'm sick and tired of seeing the recommendations of the teams working with us brushed aside by the MDPH, which knows best without knowing anyone,
I'm fed up with anticipation where time is needed,
I'm fed up with forced decisions without knowing where they really lead,
I'm fed up with the psychological pressure of “but then if you don't have a place, don't come crying to me”,
I'm fed up with time wasted in endless procedures and interminable waiting,
I'm fed up with arbitrary decisions, the opposite of what's recommended,
I'm fed up with not having a PPS and letting everyone interpret anything and open the door to “do nothing”.
I'm tired of being in pain, of being afraid,
I'm sick of living in a labyrinth, where every hope meets a wall,
I'm sick of compensating and having 50 jobs other than being a mom,
I'm tired of having my spontaneity killed.
And yet here I am, standing tall in my boots, supported by this little woman who doesn't give up, who even knows how to find the words to reassure me, who cries while saying that it'll get better, that she'll make it.
I can't let go, I don't want to let go
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I want the positive experiences that have led to Alice's success to be observed, questioned and dissected, to serve as a model for reflection and to set up observation grids, tools and adaptations to support her development, even outside this “bubble of intelligent practices”, so that she is active in all the spaces she occupies.
I don't want us to ever be dependent again! I want there to be a real space for listening and support.
I want these violent and unfair situations to be wiped off the map, and I want fairness to be a reality.
For complex profiles like ours, I want the people in charge to listen, to question, to trust, to co-construct, to get out of their own box!
I want rights to finally apply!
I want Alice to dare, dream, try, learn as freely as possible,
I want her to be able to choose, not to be subjected.
February 2025