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

November 19, 2002

Way back when before the stork came, I thought that overspending on children’s clothes was a total waste of money. Shouldn’t parents be paying down their mortgage, their car loan(s) or even better yet, maxing their RRSP contribution (401K equivalent for US folks)? Of course, that philosophy changed rapidly with Victor’s birth.

I had never known anyone with DS on a personal level before Victor but there had been a group of adults with DS that had hopped on the bus each morning during my college years. Incidentally, every single one of them had straight black hair. Needless to say, I felt kind of stupid when I realized later on that they came in all shapes and sizes just like the rest of us! They all seemed to mumble so I knew that some kind of speech impediment was involved. Each had a distinct character and it was quite apparent that, just like in the general population, some were quicker than others. What struck me most was how badly dressed they were. There we were in the late 80s and they were wearing 70s Fortrel clothes. Metal lunchboxes completed the look and it was pretty obvious that they had probably been institutionalized. I kept on thinking that really they should dress better. Wouldn’t society respect them a little more if they took better care of themselves? With that thought in mind, I decided that it was essential to dress Victor in a fashionable way. Now with two children, I'm starting to find the task quite demanding and time consuming...

I blinked and missed fall. Snow arrived last week and snowsuits had to be fitted. To my dismay, Victor outgrew his. It was huge last year and I was convinced he would still fit it this year. The last time he was measured, he didn’t even make it in the 25th percentile (for boys with DS at that!!!). At his last cardiology appointment, we found out that he had surpassed the 75th percentile. We never thought he would make it above the 50th considering his prematurity and his open heart surgery. He might turn into a tall Down’s after all! All this to say that Olivia got the hand-me-downs and that we had to go shopping for one of those suits all over again.

The expedition was scheduled for two Friday nights ago. Our plan was that Eric would rush home and feed the kids. That done he’d prepare our supper, we’d eat while the kids watched TV and I’d rush to leave for an 8 to 9 shopping spree. Just thinking about it made me sick; we’re always rushing and the kids always seem to be the casualty. Therefore, at 4:30 I called Eric and announced that I was heading home early so we could all go enjoy a stress free meal at a family restaurant close to the kids’ clothes store. We had a blast. The kids just loved the part where they could eat while coloring! Olivia is one big flirt and caught everyone’s attention with her blondness and free smiles. At the end of the meal, she wanted down so I made her walk to the washroom. In the stall, the Olivinator crept down on all fours to take a peek under the stall next to ours. She flashed the woman next door one of her big smiles and was just about ready to cross under when, trying not to sit down, I grabbed her by the seat of her pants and managed to keep her on our side of the wall. Whew!

We walked back to the table just as Eric was taking Victor down from his booster seat. Victor ran up to Olivia and gave her one of those really affectionate hugs. Well, everyone in our section was privy to this demonstration of affection and sure enough the Oooohhhh!s came pouring out. It wasn’t long until one woman decided she needed her own hug and before you know it Victor was giving out a round of hugs.

As we were walking across the parking lot, Eric asked me if I had seen that. I thought: “How could I miss it?” But I knew that what he meant was more like what are we supposed to do? I knew the day would come, I had read many books about DS and the hugging part seemed to be the most common gripe among parents of children with DS.

Most people associate DS with hugging, affection and happiness. It’s amazing the sheer number of people who have told me how happy people with DS always are. As a matter of fact, Victor is one of the moodiest people I’ve ever known. I consider his hugging a form of communication more than a form of affection. He’ll use the hugging and kissing to get what he wants or to win me over after he’s done something wrong. Actually, there are people with Down’s who are quite aggressive and there are more Downs’ with autism in percentage than in the general population. Last week as he was leaving the daycare a little boy came running up to him begging him for a hug. Victor refused to give him one. Eric is not sure whether Victor was acting cool because he was there or if he held some kind of grudge aginst the boy!

No matter what the hugging is all about, can’t people understand our need to have our children act normally? Can’t they understand that to fit in society, special needs children need to learn and respect the same rules as normal children do? Can’t they understand that teaching them these rules is a 1000 times harder for us parents of special needs children than for parents of normal children?

I didn’t say anything or do anything that night because Victor is only 3 ½ and looks like a 2 ½ yr. old. This will happen again I’m sure and I feel that I have to prepare myself for this delicate moment. I’m still not sure how I should confront people in such a situation and I would love any thought on the subject.

This episode reminded of a story my MIL told me a couple of years ago about one of her trips to the grocery store where the line up was so long that an adult with DS just decided to sit down on the floor while waiting instead of standing like the rest of the clientele. When she told me that story, the first thought that came to mind was that my Victor would never do such a thing; he would know the rules of conduct. Today I am less adamant; I realize that it will depend on his cognitive level and his physical tolerance. Our genes are adapted to life on earth, his aren’t. For him, every day is a fight against gravity so there are just some things he might never be able to do. On the cognitive side of things, I have a funny feeling that he'll know right from wrong!

Anyway, as long as I’m up and kicking I’m going to be doing everything in my power to teach him the rules of conduct. My goal is to secure him a special place in this sweet and ruthless society of ours. I just hope I won’t meet too much resistance.

Danielle