Contents
Eglantine Eméyé: “Samy is not a child like the others”
/ His birth
You look very good, a beautiful baby who sleeps a lot, very calm, who chines just enough to let people know that he is hungry. I find you perfect. Sometimes I move the pacifier in your mouth, to play, I pretend to take it off you, and all of a sudden, a wonderful smile appears on your face, I’m proud, you already seem to have a great sense of humor ! But most of the time, you don’t do anything.
/ Doubts
You are three months old and you are just a rag doll, very soft. You still can’t hold your head. When I try to sit up with my butt on my knees, my hand supporting your stomach, your whole body slumps down. No tone. I already pointed it out to the pediatrician who didn’t seem to care. It seems that I am too impatient. (…) You have four months and you continue to do nothing. I am starting to worry seriously. Especially since your grandparents, who do not mince their words, make remarks that challenge me and hurt me: “Perhaps there is a lack of stimulation, it is too calm in you” suggests my mother. “He’s really cute, a little slow, soft, but really cute” insists my father, all smiles.
/ The diagnosis”
Samy. My son. My little one. He is not a child like the others, that’s for sure. A stroke detected in just a few months, epilepsy, a sluggish brain, and that’s all we know. For me, he’s autistic. I will, as Francis Perrin did, follow the new programs that some have managed to import into France, and which, it seems, are making progress for these children. ABA, Teach, Pecs, anything that can help Samy, I will.
/ Marco, his big brother
You were three years old when Samy arrived in your life, you were waiting for him, like any big brother, jealous, but who wants to believe what his mother tells him, a brother is a playmate with whom we argue sometimes, but he’s still a friend for life. And none of that happened.
Outside you decomplex many situations: “Don’t worry, it’s normal, he is autistic, he has a disease in his head” do you bluntly announce to the people who are looking at us, uncomfortable, while Samy swings curiously, uttering little cries. But you can also tell me with a touch of humor because you have plenty of it: “What if we left her there, mom? .. I blaaaaagueuh!” ”
(…) This summer is Samy’s two years. Marco is enthusiastic. We’re gonna have a party, huh mom?
– Tell mom, at what time do we have Samy’s birthday?
– Tonight at dinner, no doubt. Why ?
– Ah that’s why … We have to wait until tonight then.
– Wait for what ? I ask
– Well let him change! let him get better! Tonight since he will be two years old, it won’t be a baby anymore, you see, it will be a child, so he’s going to walk, smile, and I can finally play with him! Marco answers me in a magnificent innocence.
I smile tenderly at him and walk over to him. I dare not break his dream too clearly.
/ Difficult nights
Samy has big seizures at night, he’s too violent towards himself. His bloody cheeks no longer have time to heal. And I no longer have the strength to fight him all night, to prevent him from hurting himself. Since I reject the idea of additional medication, I decide to design a camisole. This combination is one of the best ideas I have ever had. The first time I put it on, once the Velcro straps were attached, I thought I had them too tight… He looked perfectly fine, his eyes calm, happy… I felt his muscles under my body relax. The night that followed was not very good, but Samy screamed less, and he was unable to self-harm. However, the nights have gotten much better for both of us. I no longer got up every two hours to prevent him from hurting himself …
/ The look of the others
This morning I’m taking Samy to the daycare center. I make my niche. Two men seated in the cafe called out to me: “Say, Mademoiselle!” Where did you find your disabled badge? In a surprise bag? Or do you know someone in a good position? Yes that must be it, a pretty girl like you! ”
Am I supposed to appreciate the compliment or rebel at their sarcasm? I choose honesty. I turn around and, while opening Samy’s door, gives them my best smile “No Gentlemen. I got it as a gift when my son was born! If you want I’ll give it to you. Finally I give them to you. Because it goes together. “
/ A blended family
Richard has adapted perfectly to my crazy life. Normal, crazy, he is a little himself. Like a gust of fresh air, with his frank humor, his joie de vivre, his frankness, of those that are sometimes offensive, but which is often good to say, and his energy, he added his spark of life to ours. He arrives, cooks, takes Samy in his arms, and above all, allows Marco to lighten the weight he has ended up putting on his shoulders. And then Richard has a daughter, Marie, the same age as my big one. The two children immediately hit it off wonderfully. A real chance. And maternal as can be the little girls, she rushes as soon as Samy bumps up, offers to help with meals, to make him play.
/ Merci Samy !
But Samy has advantages. He too takes part in the extraordinary family life that we have and, in his own way, he saves us from many situations. And in those cases, Marco and I give him all our gratitude. For example, we sometimes use Samy in a store. And not just to avoid the line and pass in front of everyone (yes I admit, I’m very happy to do it, even when, miraculously, Samy is calm during the day, and there is nothing to justify my waving her handicap card to go faster at the checkout), sometimes just for the pleasure of putting someone in their place. It is like that, my little Samy, ideal for giving us air! With him, no more glue, the lack of space in the metro, or even in the square. Strangely enough, as soon as we land somewhere, there is a void around us, and in our place!
“The thief of toothbrushes”, by Églantine Éméyé, ed. Robert Laffont, published September 28, 2015. Host of “Midi en France”, on France 3, and journalist on “RTL week-end” with Bernard Poirette. She is also the founder and president of the association “Un pas vers la vie”, created in 2008 for autistic children.