Monday, September 28, 2009

I hate it when someone rains on my parade!

GREAT WALK for Autism Speaks on Saturday. The media decided to focus on the half dozen protesters instead of the hundreds of people there doing good. Following is my "letter to the editor":

6:00 AM, the alarm goes off and, if I am not already up, I try to quietly get up and shower before my 7 ½ year old, Kathryn, wakes up. (This morning, she was up at 3:00 AM, so the alarm meant nothing.) I balance getting ready for work, getting Kathryn ready for school and getting my 13 year old son, Christopher, up to start his day. Typical morning? Yes! Typical family? NO! Kathryn first needs her diaper changed and, hopefully, the diaper made for a 2 year old, held up to her 7 year old bladder. Got to find her clothes. She knows what she wants to wear and will not except anything different, but she doesn’t know the words to tell me. We get to play the "game" of me finding clothes, hoping I call them by the right name, and her crying and hitting herself because it is not what she wants. Finally, I get it right.

Fast forward to 7:15 AM. Kathryn is ready for school except for brushing her hair. Only daddy can do this and only with his brush. He is running 10 minutes late because of traffic. Kathryn is getting anxious. Finally he is home from work and I have about 5 seconds to say hello and goodbye before I leave so I am not late for work. After she gets on the bus, he gets a few hours of sleep before he has to wake up and get her off the bus.

My daughter can not speak for herself. She can not tell us what she needs, how she feels, what her dreams are, and her fears. She can not run an organization. She loves to laugh, play and loves music. I love her with all my heart! She is not autistic… Kathryn has autism.

Time is very precious for my family and me, yet we felt it was important to help raise awareness of autism and raise money for research and family resources. I, as well as other committee members, spent hours preparing for the Autism Speaks walk held in Portland, Oregon on September 26, 2009. We did it because we love our children, grandchildren, brothers, sisters and neighbors who have autism. We did it because we will not sit back and wait, hoping some day those we love will be able to speak for themselves. Over 20 young people and their parents volunteered their time, their entire Saturday, to help. They met us at 6:00 AM the day of the walk and worked tirelessly putting tents up, helping all day, and then tearing the tents down. They left the South Park Blocks looking better then when they first arrived.

Your coverage of this event sent a message! It said that the two hours six protesters spent was more important then the thousands of hours spent by hundreds of walkers and dozens of volunteers. It said that negativity wins and positive action looses. It said that the media really isn’t interested in creating a better America, a better planet. If that was the message you wanted to send, then you succeeded. If you wanted to portray a community that cares, that loves their family so much they will do anything for them. A community that wants to work toward a better America, a better planet. If that was the message you tried to get across, I will be the first to tell you that you failed!

I know that your time is valuable, as is mine, but please give me the courtesy of responding to this letter. I do want to know why you felt a disability that effect more than one in one hundred children in Oregon, and therefore, hundreds and thousands of your viewers, was less important that any other thing you could have possibly reported that day.


Friday, July 17, 2009

What it is like to have a child with a disability – retold by me.

What it is like to have a child with a disability – retold by me.

You are so excited, this spring you and your closest friends are going to Paris. You have spent months preparing; learning the language, reading books, shopping for all the right clothes, looking through pictures with your friends of their prior trips (some of them have been there before, but this is your first time). You board the plane, excited yet nervous – this is your biggest adventure yet. The plane starts it’s decent, the captain gets on the speaker and says those magical words: WELCOME TO DENMARK.

Denmark? All your friends go on to Paris and you are stuck in Denmark. At first you are sad, and then you become mad. But when you take a moment to look around, you realize that Denmark is beautiful. You keep in touch with your friends in Paris, but they don’t really understand. You meet new friends; some have been in Denmark for a long time and help show you around. They show you the places to go, where to see the best sights, how to find your way without getting lost. After a short time, new arrivals come and turn to you for guidance.

Sometimes you get sad to realize you will always be in Denmark, this trip was a one way ticket. But then you remind yourself of all that Denmark has to offer that you cannot find anywhere else. You realize that you wouldn’t trade it for the world

When I heard someone tell this story a few years back, I thought: WOW. That sums it up exactly. If life has led you down an unexpected road that you cannot change – hang on and enjoy the ride.

Tuesday, July 14, 2009


OK, so at the end of this post you are going to say to yourself: that was way too much information.

Kathryn is smart. She may say few words spontaneously, but behind those big brown eyes, there is a brain that is ALWAYS working! She has a strange sense of ‘if this, then that’. Example: When I walk in the door, I don’t get a “hi Mom”, I get “Bra off, bra off, bra off.” “Change shirt, bra off!” A bit strange? Not at all. You see, Kathryn notices many things: she notices if you put the jelly on the bread before the peanut butter (you’ll only make that mistake once). She notices if you are using the wrong pillow on your side of the bed (and she will rip it out from under your head to correct it). She notices if you skip a page when reading Dr. Seuss to her (at which point you have to start over). But what Kathryn notices the most is that mommy will never, ever leave the house without a bra on. I may go out with no makeup, even with no shoes, but will never go out with no bra. It is common for her to sporadically look under my shirt to make sure I didn’t put one on when she wasn’t looking. It’s just her way of telling me that she loves me and wants me to stay home with her.


Friday, June 19, 2009

Can you still be barefoot if you have your shoes on?

Script of morning melt down: Kathryn, you cannot go out back to swing if you’re barefoot. No barefoot, no barefoot. Go see swing, go see barefoot. No barefoot. Barefoot lie down, barefoot lie down. Sing barefoot song. Sing barefoot song. Kathryn, I am not going to sing a barefoot song. I have to go to work. If you want to go swing, you need to put shoes on; you cannot go into the back yard barefoot. No barefoot, no barefoot. Go see swing, go see barefoot. No barefoot. Barefoot lie down, barefoot lie down. Sing barefoot song. Sing barefoot song… (Realize that we are getting nowhere, time to get creative) Kathryn, you can go to swing, but you need to have your shoes on over your bare feet. Now you can be barefoot in the backyard with your shoes on. PROBLEM SOLVED!

Thursday, June 4, 2009

Kristi Learns To Blog (aka. I Want To Be Like Malena)

Step one… what is a blog? I heard it, used it, but wasn’t quite sure.
A blog (a contraction of the term weblog) is a type of website, usually maintained by an individual with regular entries of commentary, descriptions of events, or other material such as graphics or video.

Growing up, my mom kept a book of all the cute or funny things we said or did. She also recorded our accomplishments (ie. “Kristi tied her shoe today by herself.”). I was so excited to do the same for my kids. I had a small journal-type book and wrote down all the stuff my son said and did. We look back on it a laugh until we …

Then I had child number two. The memorable moments changed. I keep thinking about what I should be writing in my little book. For the past seven years I have just thought about it, but have written nothing. I didn’t know what to write. “Today, Kathryn – age 4 – learned how to ask for a pretzel.” “Kathryn – age 7 – can tell me if her diaper is wet or dry with 75% accuracy.” Sounds kind of lame on paper, but then I realized: WOW, Kathryn can tell me if her diaper is wet or dry! It’s a glass half empty/half full kind of thing.

This blog is to help remind me of those little things and how great they truly are. Hopefully, it will also help anyone who reads it realize that no one and nothing should be taken for grand it. Next time your little one talks back to you, remind yourself to be proud that you taught him/her how to articulate so well. Be thankful that he/she can talk.