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

Introduction

Rebonjour tout le monde,

**Frantic December
I was due for a break, thank God for Christmas! Victor has been sick with a cold since the second week of October. He’s been on 3 batches of antibiotics and when Dr. W prescribed the last one he announced that he’d be needing tubes. It did not come as a surprise but I was secretly hoping Victor would escape this procedure. Olivia caught the colds too but they mostly came out as the sniffles, albeit sniffles that lasted two months. In all of this Eric and I managed to catch three colds. I had not been sick with a cold since before Olivia was born, that takes us to well over two years ago. It just goes to show how exhausting it is to work full time and to constantly be awakened throughout the night by two young congested and restless kids. Victor has been joining us in the middle of the night. I don’t have the heart to put him back in his own bed because the congestion seems to frighten him somewhat. He snores, snorts and moves so much that I don’t really manage to fall asleep.

It did not help that at the beginning of December we learned that Olivia’s daycare was shutting down. Instead of taking care of other important stuff, we were searching for a new place. At the last minute, Victor’s daycare found a spot for her and I’m still pinching myself in disbelief. And now we’ve been stuck shopping for Christmas at the last minute. I can’t complain too much about this, I’m the master of my own demise… Using mom logic, I had twelve months to get my act together. Well, if we scratch out November and December that would make it 10 months!

At work, productivity was definitely not my motto throughout the month of December. Every time I sat down to read a report, my eyes would glaze over and I’d find myself reading the same paragraph over and over again. It's not as if I had time to twirl my thumbs. Our bonus structure is set to change in the New Year. They are trying to promote collaboration between the teams all in the name of synergy, the buzzword of the 90s. I already know exactly how I could enhance my own contribution but have not felt compelled to start this project in the least bit.

Last but not least, my aunt passed away on December 1st. Although I was not really close to her, I was still saddened by her suffering and affected in the sense that it made me think of my priorities. All in all, there was just too much on my shoulders and on my mind in December to accomplish anything good.

**All hell breaks loose
This week as I was shopping for Christmas presents and waiting in line for a few boxes of chocolates, I came across a familiar face from my past. We must have stood there, for well over an hour, exchanging our life experiences of the last decade. “Life is like a box of chocolates, you never know what you are going to get” were Forrest Gump’s favourite words. Boy was he right. I told him of the three loves of my life: my husband, my son and my daughter. I explained to him that Victor had Down syndrome, was born eight weeks premature, had survived open-heart surgery and today, at 3 1/2, how well he was coming along. I also talked about my precious other one, Olivia, who is now close to 18 months old.

He couldn’t help but find me courageous for having tried for a second so soon after Victor’s birth. That didn’t surprise me, everyone makes the same comment. What came as a surprise was when he said: “That’s great! Her birth must have given you back your faith in life.” I’m still sad that Victor did not get Nature’s best but never once have I ever lost my faith in life. His remark made me see once again the great divide that exists between us and them, the parents who don’t have a special needs child. No matter what I say or how happy I am or look, they maintain this conviction that I am putting up a front. They just can’t conceive that we can be OK and could actually be just as happy if not happier than them! What made this observation stick out like a sore thumb is that his mom suffered a massive heart attack some years ago, his son was born 2.5 months premature and suffers from some related side effects, he’s splitting from his wife of ten years thus losing the love of his life and entering a precarious financial situation and he still managed to show a flicker of pity in his eyes.

After having Victor, everyone kept on telling me that a sibling would be the best thing for his development. I listened but I already knew that I wanted a second child. It did not seem to occur to them that I could actually want a second child for the exact same reasons they would want a second one. It’s not as if I had to find original reasons! I guess deep down, they thought I would never have the courage. My long lost friend’s comment was a real eye opener. It has made me see what Olivia’s birth has really meant for many of our friends and acquaintances. Clearly, she was a weight off their shoulders. It erased the guilt they felt for having a normal child when, in their eyes, we were dealing with one of the greatest calamities that could befall a parent.

What does it take for them to believe us when we say that our child with Down syndrome is a blessing and we are leading a fulfilling and happy life? Is this what Jean-Paul Sartre meant when he wrote: “L’enfer c’est les autres?” (Hell is the others)

Well the road to hell is paved with good intentions… In my last entry, I wrote about my parenting style. What I came to realize upon reflection is that Eric and my style is more a goal than a set of procedures. That’s fine and dandy but now we need to roll up our sleeves and write an owner’s manual. Problem is we’re suffering from writer’s block. This became apparent after a brief chat with my mother. As I was describing to her the problems we were encountering with Victor, she observed that it sounded like a bad case of disciplinitis. It did not take me much pondering to convince myself that she was right. The question now is how do we discipline adequately? Are we expecting too much from Victor, are we approaching him in the wrong way or are we simply letting him get away with murder? It’s probably a mish mash of all of the above. Because of the fatigue that has taken over our family, we have let things go and have lost much patience. Victor is very sensitive and reacts negatively to pushiness. The routines have been totally out of whack for the past 2 months and now we expect the world to unfold our way.

Here is a sample of our problems:

-Movies and Music:
Victor is totally obsessed with movies and music: Sesame Street, Toy Story, Stuart Little, Monsters Inc. If we cut off the movies, he runs downstairs to listen to his Sesame Street CDs. If we left him to his own devices, he would spend his entire day watching movies. When he watches TV, he stands with his nose to the screen. All I seem to be constantly repeating is “Victor, you’re too close” or: “Victor, sit in your chair”.

We do our best to keep TV viewing to a strict minimum but it’s tough when trying to get ready in the morning or when we get home from work in the evening. It gives us time to get dressed and to prepare the meals. We try to get him to play with his toys but he’ll put on a big production and Victor could make himself cry for hours on end.

-Eating habits:
He does not eat any junk food and chips don’t come out unless we have guests. I’ll give him credit for his healthy taste in foods but that’s where it ends. His obsession with the pantry is driving me nuts. All day, all he wants is bread sticks. Furthermore, we can’t seem to get him to the table without a fuss. If he does not get his TV he is so pissed that he’ll refuse to eat to punish us. If he does get his TV then we can’t take him away from it. If we force him to the table, he punishes us by pushing his plate full force across the table, putting his feet on the table or cry at the top of his lungs. At one point, we couldn’t take it anymore so we played Elmo music at the supper table but I refuse to do it again. He was eating so little during his colds that we let him eat in front of the TV. Big mistake.

-Toilet training:
He had diarrhoea for a good part of the last two months and because his bowel movements have been frequent and irregular, we put toilet training on hold. Now that we’re starting again he’s putting up a fight. He screams, cries non-stop and makes himself as limp as a rag doll.

-Bed time:
When we put him to bed, he does not stay. He’ll come out of bed a number of times. The only way he seems to stay is if I get extremely angry. Needless to say, putting on this angry act can be quite draining.

-Bath:
When we call out “Bath time", Olivia lets out a scream of joy, runs to the stairs before us and heads off the bathroom. Victor grunts and protests; he knows it means end of TV and bedtime. Every single time we wash his hair you’d think it’s like he was going through the torture chamber. He fights, sticks his head out of the tub and screams. Cutting his hair and nails is just as bad but on the plus side, we’re not getting soaked.

The last time we brought him to the salon he threw up on the hairdresser. We were so embarrassed we left her a 20$ tip. Since then, I’ve taken on the profession and adapted it somewhat… I sit him in the highchair in front of his favourite movie with the bag of Oreos. I’ve tried to feed him before the job to cut down on the cookies. Bad idea. He was too full for cookies and in no way would let me touch his hair.

**No problems, only solutions:

I am convinced that a lot of these outbursts of anger and frustration stem from his lack of speech. Like any typical mother, I can’t stand the whining and because it is Victor’s ONLY means of verbal communication, he does more than his fair share of it. For me it sounds like nails on a black board and all that goes though my mind is: “Make that whining stop!” Often, I end up giving into his desires just to make the whining go away. I am convinced that we must absolutely work on his communication skills to get over this bump and I’ve been doing some research on the internet. I came across the NDSS (National Down Syndrome Society) and found an encouraging article.

At the end of the 70s, society still believed that people with DS were too retarded to learn how to read and did not include this skill in the curriculum. At about the same time, many parents who were keeping their children at home noticed that their child with DS could learn how to read as early as 2 or 3 years of age. Some of them contacted professionals to share their observations. After much research, it was discovered that teaching these children how to read as soon as possible seemed to accelerate their speech development quite dramatically. They also discovered that this reading skill also enhanced their cognitive development. All this work managed to show that the whole cognitive development process is circular. The more intelligent you are the easier it is to master language and grammar and the reverse is also true. The better you master language, the more intelligent you become.

This has confirmed many of my suspicions. When Victor and I go out for walks, I always feel that I am not teaching him as much as he could learn. Is he focusing on the wind, on the leaves or on the birds? What does he want to hear from me? While other kids are pointing and asking questions, building their own internal encyclopedia, Victor is more passive, probably not soaking up as much as he could, just like a dry sponge. I sense that the potential is there and need to whet his appetite for knowledge. In the last few months, Victor has been showing interest in words. With his finger, he’ll freely point to words asking me to read them out loud. This article has convinced me that I must follow this path. I will be starting slowly with 2 or three words and see where I can go from there. Interestingly enough, the researchers think they can use this method on other types of disabilities and will be testing it on children with autism.

**Dr Jeckill and Mr. Hyde
Victor has been feeling better during the last few days and he’s been a different little boy. I will be monitoring his behaviour very carefully during the holidays. It could be that his health is the prevalent issue and that everything will fall into place as he feels better.

Happy Holidays!!!

Danielle