The first time I visit Lemmy, it’s in a residential center in Brussels. I know that in the afternoon his mom will come to take him home for the weekend. He’s all prepared for her arrival, the luggage ready and his room tidied up.
I’ve already discussed once with his mom and I know how difficult it was for both of them. When he could not express himself verbally he used to cry a lot and had a lot of meltdowns. He used to hit his head repeatedly against the ground. His head bump would never heal.
Lemmy used to throw himself on the ground and screamed out loud when he entered a store with his mother. The noise, the crowds, the agitation were simply too much for him. His mother would do her best to ignore the disapproving regards of people around her. She would just try to be there for him, holding him, talking to him gently, reassuring him.
But when I meet Lemmy in the residential center, I see a quiet boy who answers politely and often smiles. He has certainly come a long way. His verbal communication is limited but adequate.
Self-doubt and guilt
Lemmy’s mother tells me how incredibly difficult it was for her to leave him for several days at the residential center during their first arrived a few years ago. She remembers every detail. She remembers explaining to him why he will be spending a big part of his week away from home. Feeling guilty. Having the impression of having abandoned him.
I watch Lemmy from across his room at the residential center. He is sitting on the bed, waiting for the his mom’s arrival. He is not sad, he is not joyous. He seems withdrawn into some corner of himself, thoughtful, calm. The luggage is ready and carefully placed next to him.
I get to see Lemmy at home, somewhere in the Walloon countryside, a few weeks later. He shows me his little collection of light bulbs, disco lights, and lasers. He loves everything that emits light. Later on, while I am discussing with his mom in the living room, he sits quietly flipping around pages in a book with his favorite cartoon figure.
She tells me how hard it is for parents to make sense of what is happening, accept it, and help the extended family accept it as well. It’s something that comes up quite often when discussing with parents of children with autism. Autism is not necessarily visible. It’s not something you can point your finger at. A child with autism may appear to those around them as agitated, spoiled, mischievous. As a result, it can attract a lot of negative attention in public and can generate a lot of guilt for the parents.
This lack of comprehension and negative attention can also extend to members of the family. Some of them simply cannot make sense of the child’s behavior and may be tempted to give unsolicited and irrelevant advice. The parent ends up feeling questioned and criticized, while being too tired to explain yet again what autism is or is not. Too tired to explain that people need understanding and support rather than advice and judgment.
Out of struggle and desperation and hope, Lemmy’s mother has written a short text addressed to him. It’s a text that he may or may not read one day. She tells me about it while Lemmy smiles from time to time as if he were slightly amused by something he prefers to keep for himself.
This world belongs to everybody
“You have your place in this world. You have your place. I don’t see why an ordinary child would have any more place in the world than a child with a disability. It’s not fair.
Integrate – that’s what they say. To integrate means to include. What it actually means is ensuring that life is adapted to normal people, those who walk, those who hear, those who hear, those who see. People like us who understand all the codes. This world that is built based on the needs of the majority. But a majority of people does not represent all human beings. There are many minorities that represent a lot of people.
We absolutely must create a society where everyone is welcome. It’s not normal to be afraid to go out. It’s not normal to be afraid of going to someone’s house, doing a certain activity or taking public transportation. It’s not normal to be afraid of the regards of others. Because this world belongs to everybody.”