Monday, January 25, 2010

American Idol audition

When Rio was first born and I was struggling with life's transitions- going from one to two children, moving to a sunless place where we didn't know a soul and no special ed services for Phoenix- I was really discouraged. It was then that I found author Barbara Curtis, mom to 12 kids, 4 with Down syndrome. I read her blog and wrote her some desperate emails that she answered promptly and wisely, even though she didn't even know me! Her wisest words to me were that God doesn't call the equipped but equips the called.

Here is her daughter's audition for American Idol and some great press for the DS community.

Monday, January 11, 2010


So I guess Phoenix is a "loser" because he has Downs. Yup, that's what we learned from the director of the daycare. Apparently a boy was asked why was crying and he responded that someone had called him a loser like Phoenix and then named the other boy in daycare with Downs. Hmmm. I'm almost more shocked that children so young use the word "loser" and then equate it with special needs. Is a "loser" someone who doesn't have verbal skills? I guess he could mean that Phoenix doesn't have a lot of friends. I mean, Phoenix probably doesn't get invited to play with the other kids. An adult usually has to be there to help him interact with others, namely because he doesn't have verbal skills and doesn't always understand the rules. Plus, Phoenix's idea of fun isn't always the same as a typical 4-year-old's. For example, when we play soccer with the boys Phoenix thinks it is fun just to steal the ball and hide it instead of kicking it back and forth. This is obviously annoying to Rio and even to me! I just wonder how the boy came to the conclusion that Phoenix and the other boy must be losers because they have Downs. Calling Phoenix "retarded" ALMOST seems more appropriate than calling him a loser.

I'm not teary-eyed and heart-broken about this. Of course it saddens me but I'm more like...and so begins the bullying. It is terrible that I just EXPECT that this is part of parenting a child with special a perfect world the popular kid would befriend Phoenix and thus the rest of the school would see Phoenix as this sweet, quirky human being who contributes his part to society and deserves just as much dignity and respect as anyone else. Do I expect Phoenix's younger brothers to protect him from such bullying? YES! Is that pressuring them? Or maybe they will be bullied because they have a brother with special needs and they'll come home crying that they wish Phoenix was normal. THESE kinds of thoughts do break my heart.

I guess the future is unsure no matter what kind of child you have, typical or non. Most people have heard the following speech, but I want to hold myself and our family to these standards. It seems like lately (probably a result of lack of sleep due to the baby) I am impatient and angry with Phoenix and not setting a loving example for Phoenix's siblings. Giving into those feelings and then taking them out on Phoenix is my sin. I have a lot to learn from this high schooler.

Tuesday, January 5, 2010

Babies, An Acquired taste

One that is unpleasant on immediate experience or is likeable only after being experienced repeatedly.

I was trying to explain to Ben what this expression meant and I told him it was like learning to like red wine or espresso. Am I comparing my relationship with my children to food items that need to be tasted a few times before you like them? Well, yes, at least the baby stage. I always said that I wanted my kids to pop out at age 2. Babies, no thank you. They don't do anything but cry, right? When people used to ask me if I wanted to hold their baby I always said no. Before Phoenix was born I had only held 2 babies in my life- one like 10 years prior and another one THE DAY BEFORE Phoenix was born (I truly believe that lingering baby smell is what started the labor!). So babies have never been my thing! I received a baby shower card which said, Thank God they don't come out as high schoolers. But since I've been a high school teacher I didn't think that sounded all that bad...and then came baby number three, Tiago.

I'm not dissing Phoenix or Rio. I'm just totally enamored with Tiago! He is after all, our last. More importantly, however, I think its the first time I actually know how to appreciate a baby now that I have been substantially exposed to them! This is what I'm thinking. With Phoenix, he was our first. We were clueless about babies AND Down Syndrome, which led to general parenting insecurities and worries, plus, having to "work" so much with Phoenix on his therapies. Baby number two, Rio, nearly ruined me! The transition from one to two (and moving to Norway, a new city in Norway, during the darkest time of the year, no Down Syndrome network, etc.). A friend and I seriously considered writing a book called, When 2 Feels Like 10, because we just couldn't believe that no one had warned us about this! (By the way, we both have 3 boys now.) Those were seriously the most depressing days of my life and it lasted months...and then came baby number three, Tiago.

Tiago is by no means a perfect baby. As a newborn he was awake all the time, had terrible gas and cried for hours, hated the car seat, nursed non-stop for hours, and still HATES sleeping at night. But, oh my gosh, I think he's the cutest thing in the whole wide world! I could hold him all day if I let myself. I think he's so handsome and so strong and I am just utterly and completely enamored by him...and, like red wine, I appreciate this baby .

Monday, January 4, 2010

No Sleep Till Brooklyn (or sleepLESS children)

I want to blog but i have NO TIME! I have sleepLESS children. Phoenix is taking 3 hours to fall asleep (3 hours of putting him back in his bed), Rio has night wakings and don't even ask about 5-month-old Tiago. Grrrrrrrr.