Hello, I am a little boy who only sees right with his heart...
Which doesn't make my parent's daily life any easier. So I'm blind and different (mentally speaking).
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.
DISCLAIMER
... 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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wednesday 28 september 2005
123. My perception 2 : Demonstration at the doctor's
(continued) All that to tell you that yesterday, me and daddy went to see the neuropediatrician
(for once, mommy was off duty). It's a man I see every six months to evaluate my psychomotor and neurological development.
As soon as daddy picked me up from school and told me where we were headed, I demanded some guarantees : "no little jabs !" (I get the daily evening "little jab" for my hormones - which goes down without a problem - and hospital "jabs" confused). Daddy reassures me : we are indeed going to the hospital, but there will be no jab. So I stay cool.
After an hour long trip (we must go the other end of the city), we get to the hospital.
In the admissions hall, it's full of noises, children yelling and also crying. I don't like that ! I need to be reassured, I need explanations, otherwise ... Then it's the stroller ride in a maze of hallways. Finally the waiting, not long for once, before meeting the doctor.
Feeling in great shape, I give him right away a demonstration of "how well I can jump" : I jump up and down, without any support, and manage to defeat Newton over a few centimeters. The doctor appreciates. I also perform the "stroller, stay !" show in the hallway, to show him how well I can walk now. He's very proud of me. So I blurt my usual verbiage (Marie-Anne, little dog Courage, swear words, "piapaille woops!" etc...), punctuated by my repetitive gestures, kicking, and other movements called "reassurance" movements.
Daddy knows all about it, but for your benefit I'll explain again what "reassurance" movements are : since I can't see, all I have to remind me of the existence of parts of - or my whole - body is the sense of touch and feeling my extremities move. Even sticking my finger in my mouth (see post 116) betrays the need to feel that part of my body as actually being there. The problem is, I can't do a hundred things at the same time. I can't "pick up the pieces" while I'm comunicating. That's one of the main problems with me. But the doctor is hopeful. He talks for a while with daddy, while I listen. It's going into one ear, and soon enough it will be going out the other. Hence my crude transcription, because to me it's all chinese. Maybe someone will be able to understand, and hopefully I'm not twisting their words too much.
Among all the people I meet, some of them are part of a very particular tribe : I'm talking about doctors. They resemble each other so much one may think they all have the same daddy and the same mommy. Maybe they do, maybe they all live in the same place, and they're one big family.
Doctors are funny guys whom I meet in rooms that always have the same smell and the same peculiar vibrancy : cold and muffled at the same time. I also recognize them right away by that starched tissue, with that neck and those buttons going down to the knees. It looks like a shirt-skirt. (daddy says it's a white doctor's apron).
When I make a phone call for real (not with my Buzz Lightyear phone), I'm overcome by a verbal frenzy. It's so much fun. So I end up not listening to the person on the other end and I just blurt out whatever is going through my head (preferably my stereotyped sentences of the moment).
An example ? When daddy and mommy called me from Cabourg where they were spending a romantic week-end and I was ill (a nasty conjunctivitis which required Dr Jean-Francois' intervention) ( see post 72), here's what I told them on the phone :
I told you we went to the playground fifteen days ago (art. 110). Well daddy grabbed the chance to film me when I improvised a song on the swing set. You can see it here : watch the video.
P.S.: daddy added subtitles, but they're not very visible on the net so here is a transcription :
The into : "In 4 days it's ... (?) 's birthday... I... I... what you say. I'm singing the song."
The song :
"With Marie Anne, la la la la... At Marie Ann's, I understand. It's the radio... was in a locker box. I understand if the "banne du" (?) Were in a radio, Were in a ... With Grampa we obey... to Marie-Anne And I can't say swear words ! "Piapaille" woops (bis) And in "piapaille" woops, with grampa... "piapaille" woops, woops, I was there (?) At the swear wo.. wo.. wo.. woops, swear words, in the trashcan ! So below the... She said (?) The the the Petho at Matie-Anne's...vAt Marie-Anne's" (...)
My dictionary (so you can understand) : -Marie Anne, my school teacher, doesn't want me to say swear words, "which go to the trash can" (dixit Marie-Anne). - the "locker box" is the place where my teacher wants me to learn to put away my coat and my bag. - "piapaille" is a word I made up and I like very much. - "wooops" replaces swear words - the "Petho" (the Petho table) is a psychomotility table (in the classroom) which I don't like too much. So all in all this does make sense! (hum...)
119. Chronicles of time passing time 6 (continued) : I listen to everything !
(...continued)
On this rainy sunday, they wouldn't even let me go walk the dog in the forest. Daddy got
all wet on his own. Serves him right !
When he came back, he kissed me in the neck (I was busy with my gargantuan late afternoon lunch), then I heard give mom a passionate kiss. Eva who was passing by on her scooter (inside the house!), while continuing her visit of the ground floor, let out "Oh, I just met romanticism !". Daddy and mommy burst into laughter... I didn't react, but I did hear it, because despite appearances I listen to everything ! Want proof ?
A few moments later I hear daddy talking to Eva in the living room and telling her : "Swear !" Since I'm becoming the "swear words keeper" at home, I didn't let it slide : "Daddy, you can't say swear words !" (in french just like in english, to swear means both to make a promise and to use swear words or to curse) Daddy was taken aback : "...But, I didn't say any swear words !" Mommy put two and two together right away. So daddy tried to explain to me that there is "swearing" and "swearing", well..., before admitting the correct word would've been : promised or promise.
Speaking of which, this is still one of my favorite subjects : whether it's Lou, little dog Courage , Mister René
, or anybody else, I remind them every hour of the day (and night) that they can't say swear words. I even asked mommy while taking a bath how to say "you can't say swear words" in dutch (speaking dutch has also become one of my centers of interest lately). Mommy rushed to daddy's office, who was busy writing on his computer. I heard them laugh
in the next room. Good question !(regarding the dutch translation of "swear words") Headed for the "Frans-Nederlands" dictionary. Of course "swear words" wasn't in it. They decided to go with "insult". Back in the bathroom, mommy gave me the translation : "Je mag geen beleidiging zeggen !" (literal translation of course). So I applied myself to repeating that sentence. One of these days I'll use it again for sure !
Despite the dull weather on this sunday, things were far from dull at home. I must say I gave it all I got. Besides, mommy and daddy found a way around my refusals and my "no's" which often ended up
with me throwing a fit : the word "soon" ! In other words, they warn me well in advance of the deadlines : bath, bed, etc... And it works !
So, see you soon ! ('cause it might work on you too, dear readers !)
Gasp! It's been raining all day ... No sunday market with daddy. But I'm comfortable with it
and I'm having a great day full of uncontrollable laughters.
Already at 4 a.m. I was in great shape. When daddy nicely came to tell me I had to sleep, I answered right back : "I don't wanna!". He said I would be tired tomorrow, that it was night, and that if I didn't want to sleep, I had to let others sleep nonetheless. I must say I was singing "gho - ghosts" from Henri Dès at the top of lungs, playing drums with my feet against the Fisher Price "awakening board", which has been hanging from my bed's bars since I was a baby ( you know, that plastic board with : a phone that goes "crrr" when you dial, a roll shaped like a rain stick, a little rabbit and a little turtle that race when you push them and make a "tac-tac-tac-tac-tac" sound, a bell, etc... ) I love that thing, it's a point of spatial reference in my bedroom. Besides I do almost all the creative things ... with my eyes closed (obviously!), and with my toes, mind you! Also sometimes - for example that night -, I use it as drums by kicking it. I swear the result is not bad at all : kind of like shaking a shoebox filled with marbles. At 4 a.m., in the quiet of the night, you better believe me when I say the sound is worth it. Anyway, daddy told me to try to get some sleep and most importantly to stop making noise.
I don't know if I slept, but at 9 a.m., daddy woke up to me discreetly singing. That's right, I got the message. When he walked into the room, we played "weeping chair" (the tickles from article 16), switching roles. Because, big news, now I also tickle others. (as a reaction
my parents overdo it, I can tell, but I love to hear them laugh).
Then I had my sunday breakfast with daddy. It seemed like it would never end - I left the table at 11:30 - because we kept talking daddy and me, about the countries, the winter, and most of all Mister RenÈ who kept turning the lawn mower on and off. Daddy would play the role of the person getting mad at Mister RenÈ (me) every time I would make the sound of the lawn mower being turned on or off. I must say I'm becoming quite good with that kind of imitation, down to the sound of the blades that stop spinning.
After breakfast we played with a toy that used to belong to Eva when she was little, which daddy pulled out from the bottom of a closet and which I especially love : it's a big plastic talking alarm clock that tells you the time when you manually spin the hands. Daddy explained to me that the hands (the big one and the small one) represent time passing, and therefore hours. I didn't entirely get it, nor did I pay attention because the only thing that really turned me on was hearing the synthetic voice tell the time. I must say one of my favorite sentences at the moment is "what time is it ?". Sometimes even every five minutes when I feel like it. It's just a game though, because I actually don't care at all about what time it is. Need proof ? Last night. Besides time is a notion that seems so complicated to me, and sometimes so stressful to you, you, the "not-like-me".
So I think daddy, smart guy, will try to explain to me again the concept of time passing, hours, days, etc... The synthetic voice wakes me up : "it-is-quarter-past-...-seven-". It's time for daddy to join me before I go to bed.
It was bound to happen... I can tell daddy's been doing a lot of thinking in the past month. And he took his decision...
It will be a few months soon since he started writing one, two, or three articles about me
everyday on this website, since he stepped into my shoes, making me say lots of things that I would be incapable of saying by myself.
Despite the repeated warnings, and beyond the sincere game that takes place with some readers who write to my "double", many seem to have missed the fact that my mental handicap is serious. If you carefully go over the posts, you'll see the sentences between quotation marks attributed to me are the only ones I'm capable of saying. And if you read those carefully, you might be able to discern that invisible barrier which makes comunication with me impossible.
So in order to remain completely honest, the day has come for me, Lou's daddy, to do the talking... because that's the point I wanted to make. And also because it's time to get to work on that darn book and that slightly odd documentary haunting my nights : "letters to Lou" - a little prince quite unlike all others -
Hence this website will no longer be updated daily, rather now and then. Also, I created a second "blog" (letters to Lou), where I will write these "letters to Lou" using the first person. It will be another laboratory, more discreet and a bit darker (I'll talk about it again). Finally I just created a mailing-list for those of you who wish to be informed when new articles are posted on either website.
Today I just sent a call for help to many producers who know me, like a message in a bottle, with honesty and probably also clumsiness ... as I usually do. Whatever will be, will be. My only baggage is what I am : an imperfect human being, with his qualities and his flaws. For in my own way, I am a bit like Lou, in a world I don't easily understand, and which scares me increasingly.
Lou is more than a mirro, he is an angel lost on an unknown planet.
And in that respect, I see myself in him.
Lou is existential question. No more, no less. And that's why on top of all these projects, I still have a lot more to share with you that's
not strictly about Lou or "me". But those are completely different stories.
My reason to keep moving forward today, to shake myself, and to keep walking down this path with you, dear readers.
