This blog was born in french during autumn 2003 and is now progressively being translated in your language.
New articles will therefore appear on a regular basis.
... my apologies to the people who hadn't understood this yet, all articles on this website are created and written by myself (his dad).
Lou is currently unable to do it,, just like he is to this day unable to grasp the concept of a "computer", "internet", or to focus for a long period of time on a conversation. Only time will tell us if we manage to integrate him completely in the world in which he lives.
Therefore all stories, despite relating actual facts, are obviously biased by my interpretation of his behavior. But having known him for over five years, I don't think I'm getting it wrong.
Thank you to the "Roi Baudoin" foundation ( "Parcours hors pistes" ). The new design, hosting and translations were partially made possible by their financial support.
Many thanks to Marco Pappalardo et Laetitia Bouet for the translation.
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friday 31 december 2004
25. Adrenaline (3 - end) : "Thank you" Disney !
3. (...) Speaking of which, a year and a half ago (I was then 3 and a half), the whole family spent a week-end in Eurodisney to please my big sisters, who had never been yet. I was too young to go on most of the rides. Well you know what ? Daddy and mommy, despite their request, had to pay for my entrance. Worse, no way to let me bypass the lines for the few rides I could go on. That got on my daddy's nerves, and not just a little ! He even wrote to them (beforehand and afterwards). Answers ? Zero. Nada. You must pay if you're over 3 years old. And that's the end of it. But since my parents didn't want to penalize my sisters, they had decided to go anyway.
BUT BELIEVE IT OR NOT (this is fresh news), having become aware of this problem through the website, they apologized (a handicapped child is entitled to a free entrance for the person accompanying him and special access to rides is available to him). Therefore, they invited us, the whole family, to come back some day. THANKS TO THEM.
2. (...) But what I love more than anything are amusement parks, with their roller coasters ! Seeing as how mommy doesn't like it too much, daddy is always the one getting stuck with it. I then become insatiable ! I can do the boat-swing - a roller coaster - ten, even twenty times ! Sometimes in the end daddy gets sick from it ! In some parks, the staff was so nice that we didn't have to stand in those never-ending lines which always make me mad (put yourself in my shoes, having to stand for 15,20,30 minutes, advancing one little step at a time, waiting, bumping into guard rails, etc...). In other places (at the midi fair in Brussels), some of the staff were so nice they agreed, upon my parent's request, to lower the volume of the music when I would go on the ride. I love nice people like that !
22. Bivi ici, mi sirpitte i pirdie, mi li miche, mi li miche... ( "mono-vowels" )
I guess you figured it out by now, I like sounds and words ... Especially puns. When I heard for the first time the song "Ma serpette est perdue" (where every word is altered using the same one vowel (or consonance) : for ex : using "i" : "mi sirpitte i pirdie"), I was hooked right away. Just imagine. I was so hooked that nowadays, I sometims enjoy communicating with my parents by using the same process.
Using "OUIN" it sounds a little like this : "Ouin poinpoin, join vioin proindre loin boin" to say "oui papa, je viens prendre le bain". It could also sound like : "Ji t'ime tri tri firt, mi Pipi!" to say "Je t'aime tres tres fort mon papa !".
It works the other way around as well, I understand when people talk to me in "mono-vowels" or "multi-vowels". To my daddy's question : "Sou vou biou, mou poutout Lou ?" (Ca va bien mon petit Lou ?), I reply in a surprisingly natural way : "Ouais, mouai pouaipouai, souai vouai biouai". (oui, mon papa, ca va bien).
I don't need to tell you about the look on people's face when we talk like that in the street !
(for those of you who are interested : you can hear the song on the website http://www.scoutspremiere.org/. And finally, to conclude : a little riddle, just for fun : what does "Ton dons pon onvonr ponr" mean ? (one of my favorite sentences to reassure myself).
... I love it ! I love the car, the child buggy, being thrown in the air, swinging myself, my rocking horse (where I would litterally spend hours if my parents would just let me have my way). Of course I love swings, I'm even learning (slowly) to set myself in motion on my own. To put it shortly, I love everything that moves (and where I don't have to make too much of an effort. hehe !) Movement is kind of like my own drug. My "fix". Apparently it is often the case with blind people. Try rocking back and forth for a while with your eyes close, you'll see... You disconnect yourself and feelings invade your brain. So daddy and mommy don't let me do that too much... I'm already living in my own bubble enough as it is.
What daddy thinks is that he's very lucky because I'm cute, and therefore "presentable". And he thinks about all those who, physically (or even mentally), have a much worse handicap than mine. He thinks about all those courageous parents, all those who must confront other people's look. And he says to himself they all deserve a lot of respect, a huge tribute. Already with me and my pranks, "they" are always watching us whether in the street or elsewhere. It's a natural reaction, human. Simply human. But there is a follow up to this natural reaction that lots of people forget about : smile. Simply smile.
Daddy often says swear words when something is wrong. And since he likes do-it-yourself and he's clumsy ... I often hear him say "Shit !" (he prefers that to "Bitch" or "Bordel", because he respects the world's oldest trade). That's all I needed to save the above mentioned word on my little hard drive. Hence I started saying, sometimes, "Shit!", "Shit!", "Shit!"... And in every possible flavor : "little dog Courage" style (read the article below), Mr René style (same) etc... The pleasure of transgression, once again. Well yeah, I don't see why he should be allowed to and not me... Besides, in a certain way, Sh... means worries, so it's a way for me to conquer the reigning "tension" (you don't say Sh.... when everything is ok, do you?). That'll teach daddy to watch his language ! But, as usual, I reckon I do abuse it. So daddy and mommy tell me : "No, Lou, you musn't say shit !". And I go around the obstacle by playing : (me) : "Shit !" (still me) "But, little Lou, you musn't say shit !" (me again, getting angry at myself) "Shit !" - "But ! Loulou, you musn't say shit !" (etc...). My parents searched and finally found the solution : they tell me I should use "flute" or "zut" or even (and that really made me laugh) : "Craque-boum-zute-flute!". Which means now... I sometimes corrct myself... or change my game by saying : "Shit ! - you musn't say shit, you must say "Craque boum zute flute". Finally, daddy watches his language... although sometimes, I still hear him say Sh....
... I haven't told you yet, but one of my favorite games is playing being "Courage". It's a little cartoon dog that my sister watches on TV on saturday morning. I was "hooked" because I find it very funny. He's even worse than me : he's scared all the time, and when he is he goes "beloubeloubeloubelou" very very fast. It makes laugh so much !
Therefore I often pretend to be the little dog "Courage", whom I imitate perfectly. I seize the opportunity to transgress rules about things I cannot do or say : burping, swear words, etc... then I say (pretending to be angry) "Little dog Courage, you can't burp !" (and I take advantage of the situation to burp myself !). Similarly, when daddy or mommy ask me to do something, I tell them the way the should be phrasing their sentence. It gives something along these lines : Mommy : "Lou, are you coming to take your bath ?" Me : "Little dog Courage, are you coming to take your bath ?" (then) "Now mommy !".
So mommy has to repeat her sentence while calling me little dog Courage and I reply, using the tone of voice from the cartoon : "yes". Sometimes, daddy and mommy don't want to play this game, because I reckon I do play it very very often... and for everything : I phrase the sentence the way I'd like it to be said to me ! Not always funny those adults !
(the picture in this article is the famous little dog Courage, and next to it, the same character drawn by Eva for this site).
18. Daddy, daddy .... but there's also and especially Mommy !
Daddy takes up a lot of space on this website, but you shouldn't forget mommy ! She's devoted to me in a way nobody else is... She's the one who gives me my hormone shot every evening (daddy is scared of doing it).
Then she's infinitely patient with me, and she always comes up with creative ideas to awaken me to the world... In short, she's the greatest mom on Earth ( as a matter of fact, on this saturday morning, while my daddy is typing these lines, she's at the swimming pool with me and Eva, like almost every saturday morning - daddy doesn't like swimming -). I really wanted this to be said, because my daddy, he's very talkative... also he's the one managing the site. Maybe some day mommy will write an article and daddy will post it.
Like last year, I made a video to present our wishes : "2004 sunshines through Daddy's Eyes". The clip features Lou's "first symphony" as the soundtrack ( actually his first contact with the synthetiser he received for his 6th birthday ).
Last night, I had a nasty nightmare and I started crying and calling for daddy. It doesn't happen to me very often... Once a week... (on the other hand, every night I talk out loud and become agitated in my bed while dreaming). Well yeah, so I may be blind and "different in my head", "images" and stories, in my "own way", still form themselves in my mind during my sleep ! Probably a little like in that movie "tron" since I have no visual representation of things (see the picture my daddy put together for this article). Daddy (he said that to comfort me), he thinks that it musn't be easy for me to tell the difference between dream and reality, and that one of the keys to help me get better at comprehending life, is to make sure I understand the difference. So first he tried to convince me to tell him my nightmare... But that was too hard for me. Emotions surfaced (his presence had already reassured me a little bit), and all of a sudden, I cried again for a little while. It made me feel better, especially since daddy cuddled me a lot. He explained to me that dreams (or nightmares) aren't real life, it's my head venting piled up emotions... Therefore, if something or someone bad scared me or hurt me in my dream, it's not the truth and it's not real life. I replied with the child song we made up with mommy : "You musn't be afraid". He sang the backup voice with me (I love backup voices)... I relaxed... and I said to daddy : "daddy and mommy, they are here to protect Loulou" and I fell asleep reassured.
I love being tickled ... And since I tend to project my feelings on objects (whatever they may be), one day daddy thought of a way to "fight back". I was in a bad mood and I was crying. So I said : "the couch, it's crying !" Daddy turned it into a joke by calling me a little rascal and explaining to me that a couch doesn't cry ! I did it again. So he tickled me ... and turned to positive again. But now, I enjoy making fun of my whole family by saying on purpose : "the crying couch !". It's the signal for a terrible tickling session ... which I love. (See picture in the right column). I beat them at their own game !
I love water ! Probably a memory from mommy's tummy. Well maybe just a little... I can't swim and "I'm scared" (my typical sentence). So I can stay in the tub until the water becomes cold. Same goes for the swimming pool. The problem is that my favorite game is splashing and that the bathroom floor is wooden. Sometimes parents can be such a pain in the ... and they're always repeating themselves : "don't splash too much, alright Loulou !" Ok, granted, I often forget the recommendation.
My older sister, she lives with us one week every two weeks (she spends the other at her Mom's). I don't really get it, but to tell you the truth, it doesn't matter. I also like her. She's really smart and creative. And from the top of her nearly-15 years, she has a maturity that would amaze many. At school or elsewhere, when she talks about her family, she mentions that she has a mentally challenged and blind younger brother so casually and so naturally , that most of the time, people who don't know her answer "Hey, that can't be true ... because if it were, you wouldn't say like that !". Are people strange or what ! As if you were supposed to cultivate your misfortunes and your suffering. I won't mention the ones who tell my parents (when they explain who I am) : "My God !" or "That's awful !" (sic!) "That's terrible !" etc ...
I would like to talk about my sister here, Eva (9 years old), and to pay her a huge tribute. First of all, because I eat up almost all of my parents' spare time, and she pays the price for it.
Daddy and mommy explain the reasons for that to her on a regular basis, and from the top of her 9 years, she understands. Then, because it is frequent that when I hurt myself, bump myself, or during my fits of anger, she runs over to comfort me. But in those moments, I can't control myself anymore and I'm angry at the whole world. Hence I bite, hit, scratch... Poor Eva ! And in spite of all that, she arches her back like a cat, and keeps taking care of me ( she just taped a story she made up just for me on an audio tape). Well, she's great ! Thank you little sister !
Alors, toi, ami lecteur, n'hésites pas à l'encourager, la féliciter : son adresse e-mail est : email@example.com
... 6 A.M. ... Daddy and mommy are still sleeping when I start yelling in my bed (with a lisp) : " That's enough now, Mr René !". Well yeah, I didn't feel like sleeping anymore, so I was imitating Mr René ( one of my all time classics ! - I'm always asking daddy to imitate Mr René -). Mr René is a man of a certain age who manages the school choir. So since I love singing, and most important, since I love particular voices (even though I can recognize anybody from my acquaintances at the first syllable) ... and since Mr René, he talks with a lisp, I love imitating Mr René's fits ( because there are quite some oddballs like me to handle at school ). Sadly, this morning, mommy really didn't understand anything of my impersonator talent because she came to ask me to stop !
Last June, we had learned " Goodbye Mr Teacher " for our principal's retirement. It was a secret. Of course, I knew the song after one rehearsal. So I kept singing the song at school .... " Goodbye Mr Principal...". What a surprise it was ! Hum ...
Oh yeah, one last thing, on this great morning : if, in the street, you run into a daddy and his son who keep talking with a lisp and fooling around, don't be puzzled. It's us !
Since she left me a nice message on the site, I would like to thank here Marie-Anne who tries to teach me about things and life... when I let her ! Because I'm far from being always as cute (character-wise) as on the pictures. Fears, compulsive behaviors, obsessions and confusion are all part of my daily life. Managing to focus on something is not always a piece of cake.
So thank her and everybody at the IRSA (in Uccle) : the teachers, the support staff, the therapists, the caretakers ... and Mister René (see the article above)
It's a joke, but ok ! Believe it or not when my daddy and my mommy gave me my name (Lou), they had never imagined I would be blind (they could tell right away something was wrong, but they only got the diagnosis after 4 months of hospital tests... - a very bad memory both for them and me - I won't even mention the noise from the magnetic resonance for example, etc...).
Anyway, since I love listening to stories ( like Marlène Jobert reading "the wolf and the 7 little sheeps", "the three little pigs" ...), they keep trying to explain to me that I'm a little boy, and not a wolf - the animal -. "Besides, wolves aren't necessarily bad". I think it stuck to me, especially since we have ... a wolf-dog (samoyède) who can't stop eating everything that falls off the table during my meals.
Just goes to show, you can't possibly think of everything !
Sometimes I have a real tendency to confuse day and night. Makes sense since I can't see the light ! My only reference is peace and quiet. So sometimes I party in my bed until 11 PM, sometimes I start at 3 AM ( I have the right to party in my own bed, don't I !). I reckon after that kind of solo rave party, the following days, I'm dead tired. Hence at school (special for brilliant cases like me), I'm not very cooperative, which makes M., my teacher, mad. Therefore I frequently fall asleep in the car on the way home, sometimes on the living room floor.
By the way, what are 24 hours ? A day ? A year ? What is time passing ? Some seriously puzzling questions for my parents ...
French is such a complicated language ! Ok, Ok, I don't make too many efforts, but it's very complicated in my head. I keep mixing up "I", "you", and "he" ... and to make things even more complex, I sometimes confuse assertions and negations. Daddy calls it dyslexia, or rather mental confusion. But at least my parents have to work their brains to understand ! It can only be good for them ! The result sounds a little like this : when I want my "tute" (my pacifier) to go to bed or after an owie, I say "you don't want your tute".
So my parents found the trick. They answer me : "no, I don't want my tute!". Then I have no choice but to tell them :"I want my tute". They can be a real pain ! Hence I sometimes make fun of them by systemizing our conversations that way : I say a sentence the wrong way ("you want water!"), they correct me ("no I don't want water"), and I finally say the correct sentence ("I want water please, mommy"). That said, day after day, month after month, I do get better !
What really makes me laugh (although sometimes it ticks me off and then I can really lose my temper !), is that daddy and mommy, they still haven't found the complete user's manual to comunicate with me.
Granted, I'm not easy...
The problem, see, is that I perceive life the way you perceive a dream ... or a nightmare. I wish I could be in control, but things don't always (rarely even) go the way I want. My blindness doesn't give me the same points of reference as it gives you. And then there's that grain of sand in my head which jams the gearwheels. I don't easily conceptualize things.
Therefore, try and explain to me that I can't go sit in the grass in the backyard because it's raining ! All daddy has to do is stop the rain the same way he stops or puts back a CD !
To make a long story short, sometimes, I think my parents really stink and I let them know by all means at my disposal.
Since daddy and mommy got a little tired of "papuans with lice and non-papa papuans with non-papa lice", my old man tried to explain to me the Earth, the countries... I knew I was living in such commune, in such city, in Belgium ( I even know my address ), but I had no idea there were so many countries and the Earth was so big. So daddy named the countries of the world, and the inhabitants of each one of them. Today, I can tell you that the inhabitants of Monaco are called ??? (hehe j'en avais aucune idée alors j'ai regardé au dictionnaire - Harrap's - et monégasque se traduit par ... inhabitant of Monaco !!! donc à toi de voir :p), that in Afghanistan, it's the Afghanis, in Pakistan, Pakistanis ; I know the inhabitants of Burkina Faso (pareil que monégasques...), Yemenites, Madagascans, Cubans, Guatemalans, etc...
To make a long story short, this is the game I use now to drive my parents nuts : as soon as they ask me what I want to do, or during my meals, I answer : "So daddy ... tell me the countries !" Daddy being even more stubborn than I am, he always asks me to start by naming a few before taking over, which I don't always do gladly. I don't see why I should tire myself out when daddy knows them all !
I'm about to tell you more about my musical habits. This little page to share my eclectic musical tastes with you ! Actually, I love Dick Annegarn (which I've been singing a cappella since I was two years old), Gainsbourg (his 1960 / 66 period), Muse, The Strokes, Archive, Coldplay, Bashung, Birkin, Benjamin Bioley, M (Mathieu Chedid), Karen Ann, Dutronc, Murat, Cabrel, Coralie Clément etc... I also love today's hits (o drama for my parents) : lately, I have them play "Chiwawa" in a loop... Finally, there are all the "audio" tales, with on top of the charts : "The Aristocats" (read by De Funes) and the Colargol (which my daddy has recorded on CD).
Music must follow me everywhere or almost : it puts rhythm into my meals and my hobbies at home (I'm able to listen to two or three different musical sources at the same time!). In the car, it's the radio, where, as soon as I hear a new song, I sometimes start (after the first verses and the first chorus)... a second voice.
So I was telling you I'm different in my head ... That's a euphemism ! Let's just say I find pleasure in my little world, made of repetitive gestures and words I fancy ! And that's how Papuans ended up in the hit parade of my favorite puns. You know that tale about Papuans who got lice. One day in the car, my older sister Mathilde made the "mistake" of reading me the story to keep me busy (...apart from the rocking of the car - which I love - I don't have much more to do in the car). So she started : " Among the Papuans, there are Papuans and non-Papuans. Among the Papuans, there are papa Papuans and non-papa Papuans. Among the Papuans, there are lice. Therefore there are papa Papuans with lice, papa Papuans without lice, non-papa Papuans with lice, and non-papa Papuans without lice... (and so on)" (in french, it's more funny because "lice" = "poux". So, it's make : "papous à poux , and for "not" we say "pas". So : "papoux pas à poux".).
In conclusion, I burst into laughter ... and they had to repeat the tale to me over and over. To tell you the whole truth, in fact, I am so sensitive that I can tell, simply from the tone of the voice, whether people are being playful with me or not. If they are not, I become bent on anger, denial, and ignoring the other person. Well yeah, put yourself in my shoes ! I don't see why I shouldn't have fun in life. So negative stuff and constraints have the same effect on me an approaching predator has on an oyster. And the problem is that mommy and daddy don't always have the time to turn everything into fun and games. Well, no need to describe the look on their face when early in the morning, as soon as I get out of bed, instead of saying hello to them, the first thing I tell them is : " Among the Papuans ... now papa does the Papuans !" (because on top of it I'm lazy, despite a certain form of intelligence). I'm a little bit like "Rainman" (the autistic portrayed by Dustin Hoffman) : I have my crazes, my obsessions, my fads, and my little habits which my parents, I can tell, are trying to put an end to, or at least make me snap out of.
Hi, before you read all the articles, may I invite you to read all the information located at the top ("read me"). That way, you will know who I am, what my disabilities are, etc... Kind Regards, Lou's daddy