Danielle's Diary Entries Diary Navigation: Choose A Diary Entry -------------------- Latest Entry: 1/21/03 -------------------- 1/16/03 1/3/03 12/26/02 12/17/02 12/7/02 11/28/02 11/19/02 11/9/02 11/4/02 10/27/02 10/20/02 10/16/02 -------------------- Danielle's Introduction

October 20, 2002

Chers lecteurs,

Praise

In this entry I would like to praise the SKT group of diary writers. I was blown away by the quality of the entries and if this is only the appetizer, I am honoured to be part of this table and can’t wait for the main course.

What struck me most were the multiple layers in the writers’characters and our common need to find a sense of normalcy in our lives. We’ve gone to places many people have never gone before and it shows through our complex simplicity.

As you have probably already noticed, I’m very opinionated. I’ll fight until I’m blue in the face to make my point but if I am presented with stronger and more relevant arguments I’ll swallow my pride and will change my views. This is to say that I might seem narrow-minded and prejudiced at times but I need the occasional slap in the face and in no way am I scared of confrontation.

Honesty & Predilection

I know I will ruffle some feathers with these honest words but here they are anyway. I jotted these down a week before I was told I would actually get my own diary. I was on the train and trying to make sense of my feelings.

“I was in my mid-twenties when I went to the Old World for the first time. In London and Paris, I visited all the famous Cathedrals and museums and knowing only the joys of a cushy existence, what struck me most in the art was the harsh life our ancestors had to suffer. This pain and bleak life against the magnificence of the architectural work required in the erection of those cathedrals made me realize that it’s no small wonder why the masses fell under the spell of the Church. It was their way of making sense of life’s tragedy and finding a semblance of control in their everyday life.

Today, most of us live our first tragedy much later in life. This has shaped the psychology of society in the modern developed world. Everything revolves around control. Control your health, control your weight, control the sex of your child, control how many children you will have, control when you will conceive. If you have an accident it’s because you weren’t careful, if you’re sick it’s because you did not take care of yourself, if your children are losers it’s because you haven’t been a good parent. Each milestone in your child’s life is a factor of how you brought out the potential in him/her more than the natural development of a human being, if you lose your job it’s because you did not work hard enough. I could go on and on, the list is long.

This modern societal focus on control is rooted so deeply in our psyche that our success in life is judged on this perception of control and when things go wrong the blame is so strong that in order to be able to live with oneself, we must absolutely find a culprit. This false perception of control has transformed us into a society where individuals are ultimately responsible for everything but refuse to take responsibility for anything. How ironic. Basically, we’ve tried to take Mother Nature out of our lives.

This life revelation has opened up a new world to me but at the cost of hurting my capacity for peer interaction or simpler said friendships. We (Eric and I) could try to bond with families going through the same travails as us but what I’ve found is that our life with our son is like a walk in the park compared to what some families with a disabled child have to endure. Furthermore, it’s one thing to find such a family and another one to find the perfect chemistry. On the other end of the spectrum, I tend to find many couples in my entourage who have not lived any such calamity, to be total superficial control freaks. They are flagrantly trying to live the perfect life and running on a treadmill. Frankly, they drive me nuts and that’s the source of my problem. Sometimes I catch a glimpse of pity in their eyes and if I told them my true feelings they would take it as blatant jealousy. In reality, I feel a little sad for them because the higher up you are, the harder the drop and only a few manage to go through life unscathed. No matter what explanation one gives to my feelings, it does not change the fact that I am on a different wave-length than most of my peers at this juncture of my life.

To remedy to this lacking in my social life, I now realize that I’ve unconsciously moved on to an older crowd but this has not been totally successful for I have come to realize that we, as human beings, follow a clear definite developmental path (it does not end at 18!) and steps cannot be skipped. Do I need to change my way of thinking or simply be patient knowing that time is on my side.”

Do you other SKT writers relate to this or am I an oddball?

Nature vs. Nurture

I’ve always been a control freak and in Victor’s 1st year I was like a preacher. I wanted to prepare the world for Victor. It didn’t take me long to realize that everyone is extremely busy and there are thousands of debilitating disease and conditions. People in general don’t have time to learn about everything. I changed my approach. I only preach to the people who will be an influence in Victor’s life.

The other control element that I let go is the excessive “stimulation” regimen. If there is one thing that Victor has taught me is that you can lead a horse to water but you can’t make it drink. I show him what he’s supposed to do. I repeat, repeat, repeat but I TRY to refrain form pushing. He reaches his milestones when he is good and ready. After a few frustrating, debilitating episodes where Eric ended up saying: “I don’t know who is more bull-headed, you or him!” my nature over nurture theory kicked in with a vengeance.

The Manipulatron

When I said Victor was easy in my intro I was not being clear. I should have said that Victor is easy relative to others with his condition. I can’t explain his bull-headedness without giving you a few examples.

When we put him to bed he can come out n times. The only way he will listen is if I become a witch with a capital B. Of course, I hate cracking but he leaves me no choice.

When he does not get what he wants, he can cry an hour non-stop or to the point of making himself throw up. My mother always disapproved of his letting him sleep with us but after babysitting him a few times now understands why we give in.

Last summer, I thought he would like to spend a day with his cousin at my brother’s house. Well, it was a blistering day and he refused to eat or drink all day. Only when I arrived did he start drinking something. Within one hour he must have drunk 4 cups of milk.

If you serve him his supper too hot, he gets angry and insulted to the point of no return. He sits down, touches his food. If it feels remotely warm he grunts in disapproval, pushes his plate across the table and points to the floor (his sign for saying he wants down).

When I brought him to the office to show off my 2 kids, he went knocking on my colleagues’ door for some good PR. As his mother, it was evident whom he liked and whom he didn’t. To the ones he liked, he’d go up to them and give them five. To the ones he didn’t like, he’d look away and wave. I was kind of embarrassed but it went undetected. They were tickled pink because they thought he had waved hi to them. Little did they know he was meaning bye.

Self-doubt

This is where the debate of nature over nurture gets a little thorny. I’m starting to wonder if I believe in nature over nurture only because his milestones reaching has been easy up to now. He’s not saying one single word yet and he’s so good at expressing his needs that he probably does not feel compelled to talk. I’m actually starting to wonder if I’m doing enough but a little voice inside is saying: “Victor will talk when he’s good and ready”. I went to this parents meeting that revolved around communication. Most parents there had an autistic child and told me that my approach was totally wrong. I was told not to give into him, not to give him his milk until he actually tries to say the word milk. I tried and gave in again. I don’t know if it’s because I’m too weak or if it’s the right approach with a child with DS. I don’t even know if he is physically ready to talk! Olivia’s repertoire of sounds is so much vaster than Victor’s. She’s only 15 months, he’s 3 ½ . Some people with DS are mute. Does anybody have a thought on this???

Sound Track

In my last entry I told you that Victor had been sick. A week has past and sure enough, his flu/cold has developed into an ear infection/sinusitis. At the pharmacy, there’s a little play table with Lego. As Victor sat there playing and babbling, Eric was waiting at the counter for the prescription antibiotics when the pharmacist said: “Poor little fellow, listen to him, he must me feeling so sick to be making sounds like that.” Eric said: “Oh no, don’t you worry, those are his normal sounds.” The pharmacist with a surprised look replied: “Wow, he’s different?!” Eric simply answered: “YYYYup.”

Waiting for some input,

Danielle