eSpecially Ben

This past week we found out that we were accepted to receive services from the state through a special program. We have been on the waiting list for many years, and we are so thankful that Ben's name finally came to the top of the list. It comes at a crucial time when we are feeling that his safety may be compromised if he is left alone and unattended for any amount of time. Our stress levels were beginning to stay in the "red zone" more often than not. The relief I feel now is unbelievable - a weight has been lifted from my shoulders. My mom had a taste of what it is like with Ben this past week when she visited. I asked her to watch Ben while he was in the bathtub. She sat not four feet from him, playing a game of Trouble with Ben's younger brother, Logan. Without anyone hearing him, Ben got out of the tub and was next to Grandma before she even realized it. Yes, he is that quick, agile and quiet. At least she knows I am not making up the stories I share with her....

Grandma visited us last week. This is Ben with Grandma at the park. Although it looks like they are in jail, they really are inside a once real train engine.

Last year in Kindergarten, Ben was part of a pilot program for a literacy study at the University of North Carolina at Charlotte . His teacher was given specially adapted books to read with her children. The books were enhanced with raised lettering for the children to touch and objects for the children to hold. At points throughout the book, the teacher would ask a question about the page she had just read and the child would choose from pictures or objects inserted in the book to answer the question. One book Ben read talked about rain. The adapted book came with a small spray bottle and at that point in the book, the reader sprayed water into the air. Ben completed the program in just a few months, quicker than expected. Obviously, he was motivated by the methods they used. My sister, a creative and can-do person, decided to make a book like this for Ben, using one of his favorites from the Bob the Builder collection. Using the one from school as a model, she tore the book ap...

Ben, age 6, brought this home from school. Simple, yet so very cute: Styrofoam bowl painted green for the shell with tissue paper glued on top for effect. Foam "paper" cut in shape of legs and head, with two googley eyes. Check out other works of art at Magic Marker Monday .

When I worked at a local university in the dean's office, I was known for my organizational skills throughout the campus. If someone wanted something completed, they could come to me and I would be able to assemble an event, program, service with great organization, speed and accuracy. Who knew years later I would be putting those same skills to use for my son Ben? Over the last six years, we have met and talked with so many doctors, therapists, teachers, parents, insurance companies, agencies, organizations and respite workers that I could not keep them straight without the use of a fairly good organizational system. Below I outline the system that has worked well for me. Hopefully you may take some ideas from it and develop one that works for you.   Filing Crate Purchase a crate that is designated solely for your child's information. A portable crate may come in handy if you have to take it with you to a special meeting. Make files for anything that you will receive...

Our local YMCA offered to design swim lessons for Ben. The instructor is working with him one-on-one, once a week. Ben's private OT will also give the instructor ideas on activities to do while in the water. Check out other photos at 5 Minutes for Special Needs .

While vacuuming, I heard a noise and chose to ignore it. Then something tugged at me to go investigate the source of the noise. I found Ben pinned underneath the TV and table. I lifted it all up, and pushed him with my foot, out of the way. Sometimes when Ben is wild and we cannot watch him every minute, we strap him into a chair. I always feel terrible doing it. Ben had been strapped in the chair while I was cleaning, and the guilt was eating at me. So I got him out. It was not ten minutes when I heard the bang - and it did not even dawn on me what could have happened - I kept vacuuming for another couple of minutes. Ben likes to kneel at the table in front of the TV to get a very close and personal experience with the movie he is watching. This one being a home movie, he must have wanted to get real close. Ughh! The damage - a busted lip, swollen nose and demolished brand-new 32" flat screen TV, a recent gift from our neighbors. So what have I learned? Safety is going ...

For what seemed like eternity, our neighbor's RV was parked outside our bedroom window. When I looked out, the dad from the Walton's and a bald boy with a knit hat stared back at me. The RV is wrapped to advertise the movie, Letters to God , which comes out on April 9. My neighbor promotes films and thought this might be a good way to get the word out. We certainly got the message. Last week, my neighbor asked if I wanted to see a sneak preview of the movie. Curiosity and a night out ensured my acceptance. The film is based on a true story - and to the credit of the writer, producer and director - they deliver a message of hope and prayer. In addition, they share resources and information about cancer organizations available to help families and individuals affected by this disease. A number of national and international organizations support the movie. The movie is about a boy, Tyler, who has brain cancer. As a coping mechanism, he writes letters to God explaining wha...

Perhaps I have mentioned before that Ben loves Bob the Builder. This photo captures Ben watching his new "Bob" video from Santa on Christmas Day while we opened presents, something he does not particularly enjoy. It was our way to involve Ben in something he likes and be with us at the same time. Rather than feel guilty and sad about Ben not participating in Christmas morning activities in the traditional way, we tried this innovative approach - and it worked well for the whole family.

I started a journal in October 2006 that focuses solely on the accomplishments of our children. From what they say, do, eat, like, dislike - you get the idea. I know ten days after something happens, I will most likely forget because some other skill has taken its place or as some say, Mommy Brain has taken over. When I look back, I am astonished at the progress Ben has made and how things have changed. My first entry in this journal is about a beautiful fall day that I remember so well, Ben was 3 and Logan was 1: "We went to Davidson, NC and relaxed at a park. The boys discovered leaves and how they will blow in the wind. Ben sat up at least 8x in an hour just because he wanted to do it. Logan chased the blowing leaf he'd let go in the wind." December 2006 "Ben has been standing up in his pack-n-play and pulling lamps, photos...off the table - he's sneaky." We did not know he could pull himself up and could not understand why items on a side table w...

I was doing a bit of arts and crafts last week and thought I could pass this idea on to others. A few years ago, I started this collage of the photos of my friend and family's children from the Christmas cards we receive. I felt guilty throwing away the photos because I know how much trouble it is to get those pictures taken and sent out, but never knew how to keep them in a meaningful way. This was my solution - a collage of the photos. I simply tack all the photos to a bulletin board that hangs in my laundry room. After the holidays, I toss the old ones and put up the new. It is a great way to decorate our laundry room, somewhere I seem to spend a lot of time, and celebrate all the wonderful children in our life. The photo was taken from far back so that the children are not recognizable and for you to see that I really do hang it in my laundry room! And unfortunately, Dr. Pepper and Pledge did not pay for product placement.

If someone had told me that I would do the following things on the first day of the year 2010, I would call them crazy. Wake at 6am. Be outside in 30 degree temperatures. Wake sleeping children. Drive 90 minutes to run 5 miles up and down steep hills in the freezing temperatures with once sleeping children. But I did, and I do think I am crazy. Hair of the Dog was my first race of my 12 Race Challenge for 2010. The race was coordinated by a YMCA in another state, about an hour and a half south of us. I chose this race because it was the only one in January relatively close to our home - and it was warmer when I was planning this challenge. The race itself had about 100 participants, many wearing t-shirts from previous Hair of the Dog Races. This was the 28th Annual. It seems to be a big tradition with the regulars in this town. The course took us through beautiful neighborhoods with older bungalow style homes, a nature preserve and also crossed ov...

We baked oatmeal chocolate-chip cookies over winter break. In order to get both Ben and Logan involved, I moved the "staging" area lower to the ground, moving a kid's table to the kitchen. For most every ingredient, I gave Ben a small portion to play with in a bowl allowing him to feel the oats, flour, sugar and tastung them if he wanted. The chocolate chips were his favorite. Ben really enjoyed the mixer - I bet the sound and vibration were interesting to him. Logan helped Ben with the brown sugar, Logan was an excellent helper. He scooped the batter onto the trays, getting them ready for baking. I must give credit to Logan for the photos with me in them. He did a great job!

In the fall, I received the One Lovely Blog Award from Bendigo at Bendigo's Rage . As stated in the rules, I must give the award to 15 other blogs. I have done it in increments - these are the next 5. They are all chosen for different reasons - one because it plays ABBA music while reading the blog, and a couple because of the excellent special education law they provide. Have fun reading: 1. Special Education Law Blog 2. Wrightslaw Blog 3. Special Needs Reads 4. The Blog of the Courtier The rules, upon receiving this award, state that you must: 1. Accept the award; 2. Post it on your blog together with the name of the person who has granted the award, and his or her blog link; 3. Pass the award on to 15 other blogs that you've newly discovered; and 4. Contact the bloggers to let them know they have been chosen for this award.

Ben made this at summer camp. It was fun to watch the hair grow!