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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monday 31 january 2005
49. My sixth sense
I have a sixth sense that rarely deceives me... to the great displeasure of my acquaintances. I may be blind and "different" in my head, I inevitably perceive the tensions or the joys, whether someone is doing well or not, if he's happy or unhappy... I reckon you can tell that by somebody's tone of voice... But what's really going to blow your mind is that I don't need to talk or hear the person ! And when somebody is cheating (meaning he's pretending to be happy when he is really stressed), I also notice right away. Needless to say with mommy or daddy (especially daddy) : I saw through him right away. And I don't like it when he's not doing well or stressed. And with the job he's got ... Godd thing it doesn't happen too often ! In conclusion, I'm a regular sponge... and since sometimes I'm the one creating the stress when I'm being "opposite", or even tired, I require an infinite ammount of patience.
Yesterday, in my bath, I started laughing uncontrollably. First I heard a "ploof", then mommy : "But ... Virgule ! What are you doing there ?". Then she laughed and she explained it to me : Virgule (our kitten who's in the silly age), had fallen, not in the bathtub (it had already happened the previous day), but in the toilet. I started laughing, so hard ! Me : "Virgule in the toilet ! Bah... Come on now, Virgule !"
One of Lou's monologues taped in the bathtub and transcribed word for word :
"Daddy ... ha, ha, ha ! The office,it was broken... Lou, he's broken. - blank - But no, Loulou, he isn't broken ! The office, it's broken. My office is broken... But if he doesn't have an office... huh... No, daddy, he's going to come down from the office. No, no, no, no, no - on a reassuring tone - ... huh ... Wait ! Wait ! ... But ... - blank - I'm tired of hearing you talk about the office... And the office, it's Granpa and Granma. - blank - That's with ... huh ... That's with little dog courage ... But it's later than that... And it's all alone ! ... And it's on sunday, even if you don't really want to at all. Marie-Anne says so (his school teacher)... You know how ... But you will see how I put this... But always... Always... Yes, you will see... will see... Come, let's go see what "kessinga" (-?-) is doing downstairs. - onomatopoeias - ... But, little dog courage ! It's also in the office... We should see in cold water, the office is stronger... It's evolving though... (incomprehensible moment - I'm mumbling) ... No ! I say : No ! But grandpa, I'm going to go get something to drink in the th... in the things... However it's going to last until the seaside... Then it will drive... (another incomprehensible moment) ... I'm going at grandpa's... until the flower fair ( = our neighborhood fair). For the works ...
(and it goes on like this for about ten minutes ).
Often, in the bath tub (or elsewhere ... meaning about half the time), I'm in my own bubble, like mom or dad would say. It's the exact opposite of my moments of "light" (see the article "emotions and light"). When that happens, I say a lot of things, I "spit out" every word I know, and in particular those who awoke some feelings in me. I'm sort of debriefing myself. For example, I hate it when daddy works at his home-office, because it means he's not available for me. That spawned crisis' for several weeks ! Nowadays, things are a little easier on that matter ( for daddy's sake who had trouble writing stories while hearing me cry downstairs ). Anyway... All this to show you, word for word, the kind of conversation I sometimes have with myself... (continued)
Since the day I was born, or actually since she knows I'm blind, mommy had the brilliant idea of putting a very soft quilt in my bed, like silk. I love it : it's at the same time my pillow, my quilt, and my blanky. Actually it's really mommy's quilt from when she was a kid. Hence I have to admit it's not in very good shape. Regularly, when we go at grandma's, she performs an emergency mending because the stuffing is pouring out from the worn out parts. I won't even begin to tell you how many times it's been mended over the past five years. But I love it so much ... It's essential to me. Besides, often, instead of saying I'm going to bed, I say "We're gonna go see our soft quilt". By the way, you have no idea the positions mommy and daddy sometimes find me asleep in : often completely uncovered (despite a second quilt), sometimes rolled up in a ball or on the contrary, completely spread out, other times on my knees, curled up, the soft quilt on my head (to hide well?), sometimes, finally, sitting down legs spread out and my body laying down on my stomach over the bed. You should know I'm incredibly flexible ! I could sleep anywhere and any way. Sometimes I even fall asleep on the living room floor when I'm really tired from a busy day.
I've got a good one for you : from time to time, my parents take me to the countryside on week-ends, in a very rustic house (it used to be a farm). I've got my own room there, right next to theirs. One night, when I had decided to party on my own in my bed, my mommy and daddy were awaken by the noise I was making. I should mention there is only a thin wooden partition separating our rooms. They were under the impression I was talking to ... a ghost ! They could distinctively hear two very different voices : mine ... and a very low-pitched voice which they immediately recognized : Grandpa ! Yes, I was imitating perfectly the voice of my grandpa, who I love. It sounded something like this : Me : "How are you Granpa ?" Him : "I'm fine kid... how about you?" Me : "Very well, and Colargol hasn't been to school". Him : "Really ?" Me : "And do you like the armchair ?" Him : "Yes kid, I like the armchair. And do you want to go out in the yard ?" Me : "Yes, because grandma, she's gone." Etc... I can't tell you how much mommy and daddy laughed... Same tone, same intonation, same words (only grandpa calls me "kid").
It's just like the day when I would frantically repeat over and over the same uncomprehensible sentence : "alo, alo, alo, djacbai". Until the day daddy guessed the meaning of my onomatopoeias. I was imitating grandpa when he picks up the phone : "allo, Jacques Bailly...". I guess my parents can be a little hard-headed !
(a text received by email from Caroline) Nothing left to say ... about the reason for sharing this with you. (I would love to sign it, but it's not from me...)
The mother of a handicapped child says : "I am often asked to describe what it is like to have a handicapped child, so I can help people who don't know this unique experience to understand, to imagine what I would be like. So here ! Everything starts with the pregnancy and the desire to have a child. But expecting a child is a bit like organizing a fabulous trip - to Italy for example -. You buy lots of guides, you make beautiful projects : the coliseum, Micheal-Angelo's David, the gondolas in Venice. You learn a couple of sentences in Italian. This is all very exciting. After months of intense preparation, D-Day arrives. You pack your bags and leave. A few hours later, the plane lands. The pilot tells you : "Welcome to Holland!"
My favorite game for these past few weeks has been "Red lights ! Green lights !" You probably guessed it, the idea is to hold still when I say "Red lights !" and the opposite for "Green lights !". It is sometimes a good way for my parents to make me hurry when I'm lagging behind (for example in the stairway when going upstairs to take a bath), sometimes a good way for me on the other hand to make things drag on and more fun. So I adapt the game to everything : walking, eating, getting dressed,... and playing. Sometimes of course it's not very convenient for mommy and daddy when I decide to use "red lights" a lot, it slows things down even more. But it's so fun freezing on the spot, to stop with a spoonfull of cereals (which starts dripping on the table without me realizing it)... It's like this for everything with me : white or black, positive or negative... according to my mood at the time. Anyway, I love this game, which sometimes makes me tremble (litterally) from pleasure. Oh, by the way, I know there are also "orange lights", but I'm less interested in that... Why half-measures ? And most of all, why so much seriousness in this world, which I would like to be the landof plenty !
Since I'm shy about touching objects and I'm not much of an "entrepreneur", two years ago my schoolteacher came up with this sentence to motivate me : "Loulou, you must play with your small hands". Since then, it's become a classic in my language, especially since I still have (lucky me) the same schoolteacher. It sounds something like (to reassure myself and with a motivated tone of voice) : "See, you (me) musn't be afraid of playing with your small hands !" (as a reminder, Lou oftens confuses "I" and "you"). And every morning, when I'm driven to school, mommy or daddy remind me, like a nail you drive in, over and over : "Have fun playing with your small hands and Marie-Anne!"
Indeed, it's important if some day I want to learn braille, and discover a minimum of things !
6 PM... Quite a busy day. Daddy left the house and forgot to tell me he was leaving. Fatigue and emotions fill my heartwhen the time comes to meet him back at home. My sorrow is unconsolable, my words confusing. The suddenly, a flash of "light" in my head. I carry on words and conversations with mommy and daddy : " Lou is crying (...) Loulou musn't cry. Loulou musn't curse or Marie-Anne gets mad "(his schoolteacher, see articles below). Mommy : "That's right dear, and Marie-Anne sure is right". (My sadness slowly fades away) Me : "Yes, I must obey Marie-Anne, Marie-Anne is nice. But she gets mad when I curse. So I can't curse. It's just like mommy and daddy when they get mad when Loulou doesn't behave. By the way (note from editor : precisely what he said!), I must play well with my little hands and Marie-Anne, otherwise I'll be a baby Cadum!" Daddy refrains himself from laughing : "That's right, because Marie-Anne has got lots of things to teach you." Me : "By the way (note from editor : and again), I musn't be afraid. I must trust Marie-Anne. I must learn well so I'm not afraid anymore". - blank - "Marie-Anne, mommy and daddy are here to protect me. That's why I musn't be afraid". (I'm all smiles now and I hug daddy) "I love you, my dear daddy!" Daddy : "I love you too, and that's why we help you not be afraid anymore. The more things you learn, the less afraid you will be". I end this by getting all sweet on mommy's and daddy's face. Back to positive. I vented my emotions... I'm all cute, all happy. Life is good, and I know fully well that Marie-Anne, daddy, and mommy love me a lot and that they do things for my own good.
On the way back from my walk with mommy, I found daddy out on the street, busy replacing the flat tire from mommy's car. I liked the screeching noise of the bolts coming off and I wanted to stay next to him. "Crac, goes the bolt!" - "Cling! goes the wrench that keeps falling". So I "helped" him in my own way. Then he let me feel the flat tire and the new one. I even tried lifting one. It's heavy ! Daddy also showed me that a tire rolls. Well yeah, to me, a car is basically just moving from point a to point b, some noise, movement, a back door (mine), a seat and the back of daddy's seat, and finally the body. Hence I only have a partial perception of what a car is. The same goes for many other things, which I discover little at a time. That's why sometimes, on the way back from school, when we arrive in the neighborhood, he takes me on his lap and I drive the car with him. I ab-so-lu-tely love holding the steering wheel with him. "Left ! Right !" And then there's the horn. But daddy doesn't let me use that too often.
There, the flat tire has been replaced. I feel just like the tire (it's nap time because I must have been partying too in my bed last night). And daddy too. Nighty night !
"A mesure que le temps passe, je mesure le temps qui passe (...) On s'embrassera dans le cou. Il y aura tout autour de nous." (Benjamin Biolay - les cerfs volants) (everybody is free to understand this the way they want)
Tales of a saturday morning unlike the others... Although. Mommy and daddy came home quite late (concert then restaurant with friends). But at 7:30am the rythm of the week takes over sleep. I babble and get restless in my bed. Eva comes to take care of me so mommy and daddy can sleep a little ... I'm lovely with my little sister, but at 8:15 ... I'm hungry. So my sister goes upstairs to get my mom (saturday is daddy's resting day). She gets up and joins me ... But I want my daddy. I don't know that yet, but at that very moment, my daddy hears me requesting him and thinks to himself he won't be able to sleep anymore. He thinks about Biolay's song. How about a family breakfast ? Croissants, fresh orange juice, coffee and hot chocolate for the girls. (this doesn't happen to us too often... seeing as how our schedules are so different during the week, and then since I always need to be taken care of when I'm eating, it's not easy being "together"). So daddy gets up (he's going to take a nap this afternoon ... because this evening, they are going over some friends', the fools !). When I hear daddy's footsteps in the stairway, I exult
Finally, my sister Eva is in a cast : a small sprain... More of a placebo than anything else(only for ten days), but hey... You'll have to wait until tomorrow to get news from me though because daddy just got home
from the hospital, and he's leaving again to go to a concert (Benjamin Biolay). Well yeah, he also deserves some time off (with mommy). (Crazy days follow and resemble each other). Later !
Besides the cat, yesterday was a crazy day for mommy and daddy (as they happen quite often). First, they had to get the cat vaccinated, reassure me because the day before I had used too many curse-words at school and my teacher (rightfully) got really mad. So I kept "debriefing" on the way home by constantly siding with daddy and mommy : " Loulou can't say curse-words, otherwise Marie-Anne gets mad " - " Now daddy " - (the classic gameof repetition where you have to remain zen with me while I repeat, re-repeat, and insist
that the person I'm talking to replies). It leaves little room and time for dialog and other members of the family ! And the cherry on the cake, Eva tripped in gym class and has a swollen foot. On top of it, thursday is the day of her psychotherapy (it was her choice and it's fine this way : so she can express herself about what she live about me). Then it was my turn to act like an idiot in the staircase and fall. Daddy still has to take Eva to have an x-ray made, and many more things to do...
On top of the dog, Mega, whom I still haven't introduced, I have to tell you about the new pet who arrived home a month ago : Virgule (comma). Sure there already was a cat, Fritz, but he died in early july. I don't know what that means, but one thing is sure, he's not around anymore. So on Eva's request, mommy and daddy got another kitten (thinking it would also be good for me!). But I don't really care for him, except he's always trying to jump on me when I'm swinging and I don't like that. We're not exactly friends yet... It's so-so... Although... Yesterday morning, when driving me to school, daddy took Virgule along to go to the vet and get his first vaccines.In the car, Virgule was crying constantly in his basket-cage. So I was all cute. During the whole ride, I talked to him : "You musn't cry, little Virgule... You musn't be afraid... It's just a small injection..." And I know quite a bit about that, since every evening I get my daily hormone shot (which I accept elegantly). Maybe that will make me closer to Virgule...
Sometimes I like being "Roudoudou". Daddy always says the biggest satisfaction for a mommy or a daddy is when their little child is asleep in their arms, in a relationship of complete trust and surrender. He like this situation so much. But with most children, that relationship eventually fades away, or even disappears. None of that with me ! Anyway I don't really have much of a choice : because of my handicaps, I have to trust others. So I can be all cuddly in other people's arms. Besides, I've learned how to cuddle in a pretty cute way... And then, I copied my sister Eva, and I make big declarations of love to my parents : " I loooooooove you, mommy!" (or daddy). And they're very good at showing me they appreciate that. It's a nice change from the hard times !
Thanks to music I discovered that other languages were spoken throughout the world. Not like Eva, my sister, who when she was little asked what you had to do to get several languages by pointing to her mouth. No, I got it right away. So daddy started talking to me with the english accent. It didn't take very long for me to start imitating him. Anyway I'm very good at speaking English, well, French with an English accent, and I find it very amusing. I do however pronounce a few words in English. Especially since the beginning of this year, I have an english classmate, and I hear my teacher talking to him in Shakespeare's tongue. Hence, in addition to "Yes", I came home telling mommy "why are you crying ?" (in
english). Everything definetely sticks to my "hard drive". Imagine if some day they manage to "wire everything right". But that's a whole other story !
I love more than anything to invent, create or reproduce sounds. Some day daddy should
even mention it to his sound technician friends from movies (I'm kidding, because to do that I would need to be able to work while looking at the pictures!). In fact, I can imitate perfectly (among other things) the sound of the lawnmower and the edge trimmer. Notice the accuracy : they are two very distinct sounds ! As soon as I hear a lawnmower in the neighbourhood (even two hundred meters away), I wanna go out in the yard to listen to it... Hence the crisis when the grass is wet (see Article of 24/9 MyOwnWorld "my user's manual"). The most beautiful anecdote in that area dates back to ... sunday. Our neighbours have been refurbishing their basement for a week : cleaning, painting, drilling holes, etc...
So on sunday, the neighbour sees me on my way back from the market with daddy and he comes to say hello : " Hello, Mister Lou" I recognize him immediately by his dutch accent... and I don't reply. Daddy : "Lou, are you saying hi to Geert ?" My answer : " Vrrrruuiiiiii" ( onomatopoeia ) Geert (nicely) : "What lovely noises you make". Daddy - TILT in his head - : "Lou, what is the noise you're making ?" Me (Lou) : "I'm imitating the works". And indeed, I had just perfectly imitated the noise of the power drill drilling into a rock and which can be heard from a distance (I'm convinced, dear reader, that this particular sound comes immediately to your mind). Daddy had guessed well and Geert, he couldn't believe his eyes !
I love sounds so much, that not too long ago, one of my "trips" was to go in the entrance hallway and stay there for a long time making the door to the living room squeak. I have to say daddy hadn't oiled it in a long time and it made beautiful sounds based on whether I moved it slowly or very fast. A real haunted house. It was great and I was having the time of my life : ME : "Door, you can't go "weeeeeeeeee" !" Then I would make the door squeak and get even more mad : "Door ! What did I just say ! You can't squeak !" or " You can't cry ! " (etc...).
The problem is even the neighbor would be woken up by the noise of the door when mommy and
daddy came home late on week-ends (they like partying and blowing off some steam on w-e). So mommy (that's right, mommy ! Congratulations daddy !) oiled the hinges of the door. Drama ! I got so mad... I was infinitely sad and I kept saying : "The door, it's crying because it doesn't squeak anymore!". And that lasted for two or three days ! So my parents found the trick and told me : "You see, the door, it's not crying anymore... It means it's happy ! It didn't like squeaking". They sure got me there ! Nevertheless, such an argument doesn't exactly help them making me understand that an armchair, a chair, a table (...) aren't alive the way us humans or animals are. But that's a whole other story.
Going on about motor skills, or rather mobility, it would be great if everybody made an
effort not to park on sidewalks, street corners, (...). It often happens to us, to daddy or mommy (with me), having to get off the sidewalk and onto the road because somebody "in a hurry" or "inconsiderate" parked his car badly (just like during Boitsfort's market, on sunday mornings... don't tell me you can't walk the extra fifty meters). Conclusion : If you help and think to the others, the others will help and think to you. Regards Lou's Daddy
28. My motor skills (3) : the freedom of movement of the visually impaired
Daddy dreams that some day, researchers will think even more about the millions of blind and
visually impaired people around the world (100.000 in Belgium alone - just shows how many
there are holed up at their home!). It would be great if someone came up with a GPS (global positioning system) even more accurate (we're getting there), but most important, developped devices adapted to us :
devices we could talk to, and that would answer us back. A device that would tell us where we are ("you are in gare du Nord" for example)... It would be a revolution for all of us (speaking of which, they say this year is the european year of the handicapped)
Since I'm moving around on my own, it's important that nothing is left laying around on the floor of the living room and that things can always be found in the same place (such as my
rocking chair for example). A chair pulled out from under the table and forgotten, and it's the crash. A
tennis ball forgotten by the cat ? ...and I make a slip. The dog laying down anywhere ? "Kai Kai Kai"... I crush ! (although with time she finally got it. Even if she's sleeping, she hears me coming and moves out of the way right away).
Anyway, it's strange, but the whole family (and my sisters), who were rather messy, they
all became great cleaners ! He he he ! (continued...)
I started walking on all fours around the age of fifteen months... But I didn't really feel
like it. I was basically scared ! Put yourself in my shoes. Anyway I'd rather live of sounds. Around two years old, I started walking by holding hands. My guide (mommy, daddy, or somebody else) being in charge of warning me about every obstacle : a step, a wall, a door, a staircase... I had to learn balance as well. And I swear to you, without any sight, it's not easy ! That's how I eventually ended up walking "on my own" around two and half years old. Because I had to and because I was forced to ! Since then, I'm starting to feel more confident, to take more initiatives in the places I know. I climb up and down the stairs on my own (...always on demand) like a king... But I often forget to put my hands in front of me. Soon, if I apply myself to it (and if I accept it !), they will give me a "pre-stick" at school. It's a weird thing, like the handle of a lawnmower (so shaped like an arch), except at the end there's a roll rolling over the ground. It will teach me to "feel" obstacles with my hands by the means of using a "stick". Finally, they will have to wait until I'm all grown up to give me a real stick and for me to know how to use it. Then, I'll especially have to think a little more in my little head, because if it was
anything like nowadays, I would leave it behind anywhere and wouldn't remember where I put it. (... continued)