Thursday, January 28, 2010

Support Troops on Their Way

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.

If you are a parent or caregiver of a child with special needs, be sure to investigate all options for services. Never assume you do not qualify. You may feel up to the task now as caregiver, but things change - situations get more difficult. Get on those lists now because it could take years for your number to be called. Follow-up with your case managers, stay in touch with the agencies who may provide services and make sure they know who you are. And as always, be sure to send a photo of your sweet baby for them to keep in their file!

Wednesday, January 27, 2010

Special Exposure Wednesday: Grandma Love!

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.

Tuesday, January 26, 2010

Gadgets & Gizmos - Part 3: Adapted Books

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 apart, glued the cover to the front of a 3-ring binder. Each page was put in a plastic paper protector and inserted into the binder. She added items to each page that were within the story of the book, such as a bird's nest, toy truck, cat or cell phone and attached them with Velcro.

The story comes alive when objects can be used to demonstrate what is being read. With each page, a question was asked and Ben would answer by choosing between two objects.

 For Christmas, Kim, who has worked with Ben for the last two and a half years, made Ben another one of these books. She used some other techniques: she laminated each page and then put them in a 3-ring binder. She added extra paper to the bottom of each page and attached two laminated pictures with Velcro. After reading the page, a question is asked and Ben can choose his answer from the two pictures. The pictures can be switched with others for an extra challenge.


These are two choice cards.
The question may be, "What did the man use to get around the town - the scooter or the cat?"

I believe this pilot program was successful and will be offered to school systems throughout the country at some point. But if you have some time, creativity, Velcro and a book, you can try to make one of these on your own. Depending on your child's interests, abilities and sensitivities, you can design something that will work specifically for them.

Disclaimer: The equipment and tools I talk about in "Gadgets & Gizmos" is not sponsored by any company. This is not an advertisement for any product.

Monday, January 25, 2010

Magic Marker Monday: Turtle

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.

Thursday, January 21, 2010

Being Organized: Turning Scraps into Notes & Files

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 in reference to your child: insurance documents, school information, IEP documents, doctor evaluations, medical records, each of the private therapies your child receives, Medicaid, Social Security, equipment suppliers, receipts for taxes - anything that will help you find something quickly and easily.
  • Keep the files in alphabetical order or some way that makes sense to you.
  • Place the crate in an easily accessible area. You may need to file weekly, depending on how much information comes in. if it is not easy, you will not do it and then things get misplaced.

  • Purchase a composite notebook. Place the current date, your name and contact information inside, although this notebook should never leave your home.
  • Tape all business cards directly into this notebook. I've tried stapling and then the notebook gets too bulky. Contact information will be at your fingertips for fax numbers, email addresses, mailing addresses and other vital information.
  • Write down "To Do" lists in this book with a date at the top. Helps you remember what you set out to do. Things that are important tend to get completed and things that aren't as important, go by the wayside. It is also a good way to keep track of what you have already finished and can be proud of.
  • Keep any notes on schools, doctors, schedules, camps, meetings, people, etc.
  • This notebook could last a few years. When you are finished, get another one in a different color and label it #2. The first will still be a reference. 
  • If you write a note on a Post-It or small piece of paper, tape it directly into the book.
  • I don't worry about keeping it neat, just keeping the info.
  • Flipping through the notebook to look for a contact, conversation or other information takes a lot less time than fishing through your purse, dresser drawer or desk for the small note you may have left somewhere.

Storage Files
  • Anything over one-year old not needed each year can be put in a plastic storage box with a cover and placed in a dry location, i.e. garage, basement or attic. I keep some of my son's medical records in the Filing Crate because I am often asked for them.
Computer/Phone Files
  • Doctor and therapist's phone numbers are kept in my contacts on my cell phone. In case I am late, I can quickly call to give them a heads up.
  • I try to send everything by email so I have a written confirmation of what everyone has said. I keep ALL emails. I NEVER delete an email; you never know when it may be useful.

Paper Rules to Live By (or Learn From My Mistakes):

  • Don't throw anything away. You may need it for something and better to keep it in the Storage Files and have it for later than to have it lost forever.
  • Always write notes when you talk with someone on the telephone - their name, date you called, next action step and who is responsible for that action.
  • There are certain documents you may need to give often. I keep a file called "Extra Copies" so that I do not have to find that document each time, copy it, put the original back, etc. I make a few copies of it for giving out to those who request it. Immunizations, medical history, doctor's evaluation, description of my son's condition and insurance card are some of those items.
  • Assume you will not remember anything about a conversation - write it all down in the notebook.
  • Take multiple business cards for referrals and personal use. You may lose one card, but harder to lose three!
  • Date everything.
Have fun with it too - okay to personalize your notebook with stickers, quotes, anything to make you want to keep it around.

Wednesday, January 20, 2010

Special Exposure Wednesday: Swim Baby Swim!

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.

Tuesday, January 19, 2010

Move Over Guilt, Safety First

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 to be a huge issue for us as Ben gets taller, stronger and heavier.
Ben can now reach the stovetop and counters, climb onto his desk and pull-up to his dresser. At Christmas, we found out he can unlock his bedroom door and crawl around the house unnoticed. I am unsure how to handle all of it. It is overwhelming.

I wonder if we can teach him safety. The speech therapist suggested making red circles with an "X" near areas that are off-limits. Any ideas are welcome.

The other thing that I have learned is that my guilt - - is my guilt. Acting in a way to assuage my guilty feelings may not be in the best interest of Ben. Worrying about what others might think of me because I keep my child locked up is not a reason to unlock him. Finding ways to make our home secure, teaching Ben safe behaviors and continuously monitoring my own feelings and actions will keep Ben protected.

Thursday, January 14, 2010

Letters to God

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 what is going on around him, to him and to the other people in his life. This story demonstrates how this boy and these letters change the course of many people's lives.

Some of the movie is hokey; okay a lot of the movie is hokey. At times, it felt like an Afterschool Special or a Lifetime Original. The actor playing Tyler is excellent, and that helps to overlook some of the other bad acting. There are some scenes done well with good music. But there are others that made me cringe in my seat.

At the serious parts, it did make me think about my relationships with my typical children and how they are affected by Ben's special needs and the attention he gets from us. I thought about some of the questions I have posed in other postings about the gifts Ben has given us as well as the roller coaster of emotions we feel on a regular basis.

Overall, you need to bring tissues, an open mind and heart and take away a message of hope and love.

Wednesday, January 13, 2010

Special Exposure Wednesday: Guilty Pleasures

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.

Tuesday, January 12, 2010


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, the table - he's sneaky."
We did not know he could pull himself up and could not understand why items on a side table were always on the floor.

I actually videotaped Ben while he was supposed to be napping, and when that did not work, I peaked through the window and spied him standing up.
February 2007
I am able to track Ben's obsession with Bob the Builder by this journal entry:
"Ben LOVES 'Bob the Builder Live'. He can watch it non-stop if we let him."
July 2007
"Ben sayng words: Ball, Outside, All Done and Swing"
Ben, at one time, seemed to say words. The he stopped. It is a little sad and also perplexing when I read this entry.
Summer 2008
"Ben is a crazy man in the walker, running everywhere. First year for Ben in Imagination Station Camp and they did not know what he could not do so they gave him a lot of independence. He can sit at a picnic table with no help. We donated his snugseat wheelchair so he now sits at the dining room table in a regular chair without help."
I think "Wow" when I read this. I forget he even had a special chair to help him sit.
I keep this journal for myself and in hopes that in years to come, my children will want to read about themselves and the little and big things they did as little kids.

Monday, January 11, 2010

Magic Marker Monday: Photo Collage

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.

Thursday, January 7, 2010

Crazy Talk!

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.

  1. Wake at 6am.
  2. Be outside in 30 degree temperatures.
  3. Wake sleeping children.
  4. 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 over creeks and old railroad tracks. It was the best course that I have run thus far. But it also could be that I knew Panera Bread breakfast was waiting for me when I finished.

To sum it all up: My husband's last words before we left to go home were, "Are we signed up for next year?"

Wednesday, January 6, 2010

Special Exposure Wednesday: The Great Cookie Caper

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!

Tuesday, January 5, 2010

Even More Lovely Blog Awards

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.

Monday, January 4, 2010