This is non-negotiable: the lady at the Intellectual Disability and Autism Spectrum Disorder Rehabilitation Center will close my son’s file.
This child needs a specialized educator, I swear, I’m not going to do it alone – my voice chokes as I say it.
The lady sitting in front of us is head of intellectual disability services and her mission is to close the files of users who have been receiving services for more than five years. She says that politely, she informs us that she is “reviewing the service trajectories”. Let’s call her the Ice Lady.
My son, Lou, 12, lives with Down syndrome. He is playful, affectionate and beautiful, but he has difficulties in all areas of his life. He needs help to get dressed, is not independent in the toilet, no one understands when he speaks except his father and me, he is in a highly vulnerable situation every second of his life because he does not know say “no” and he doesn’t understand the world around him. Brief. Despite his disconcerting charm, he is a very handicapped child.
The Ice Lady brought us in person to a windowless room at the CLSC to announce this decision. “Because it’s better in person.” »
She speaks in a calm and confident voice. She apologizes for having a bit of a cold, a bit of shortness of breath, it’s difficult with this bug on top of her back pain.
Its objective is to obtain our support for this file closure project. Better: our collaboration.
She says “We will equip you with winning strategies so that your son can generalize his learning. »
Free translation: we leave you alone with a five-year intervention plan that you must implement on your own. Good luck !
Is it because of the waiting list? Staff shortage? From the strike?
” No. This is because our users’ files cannot remain open throughout their lives. That’s all. »
Fast-forwardlet’s skip a few passages in the form of Olympic-level tongue-in-cheek: we leave this room an hour later, my partner and I, slamming the door, while the Ice Lady hands us the leaflet from the complaints commissioner, asking us for comment. voice still so soft if you remember how to find the exit.
Tears, anger, incomprehension. Want to scream, to hit.
Brief. Madame de Glace’s plan to obtain the parents’ collaboration failed. Damn. She will not have 100% in her service rationalization bulletin.
Why would I collaborate with this project to close the file of my son who has special, sustained and severe needs for his entire life?
Why would I accept that my 12-year-old child finds himself without support at the dawn of adolescence which invades his body while his brain is millennia away from understanding the changes that are beginning within him?
Why close his file today when he is starting to respond better to interventions and move forward, after years of standing still?
Why now when we are starting follow-up with a competent educator, after years of fragmented services, given by extremely poor speakers (in total: six in the last two years)?
Why this unilateral decision, without consideration for the needs of the child and the parents?
I refuse.
Except that it’s going to happen anyway. Because Lady Cold has power. Failing to have some form of clinical judgment.
Strike ? I would do it if it could prevent my child from being dumped from the rehabilitation service when he doesn’t yet know how to say “no” when someone hurts him.