Preparing for Surgery can be a daunting task for an adult, but for a child it can be downright scary. Most people are scared of the unknown. Children are no exception. Kalib wants to know every detail beforehand. He likes to ask lots of questions and expects answers to all of them. Sometimes I don't know the answers and so I tell him "I don't know." He accepts it and goes on to the next question. Sometimes I tell him to ask the nurse or doctor. Most of them are more than willing, happy even, to answer questions. I have found several books and toys that have helped Kalib (and his siblings) better understand what to expect.
Children with Special Health Care Needs (CSHCN) - division of Texas Dept. of Health dedicated to supporting family-centered, community based strategies for improving the quality of life for children with special health care needs and their families.
The Center for Children with Special Health Care Needs - offers information and resources for parents and professionals who advocate and care for children with special health care needs.
The Care Notebook - an organizer for families who have children with special health care needs. Families use Care Notebooks to keep track of important information about their child's health and care.
Kalib has little to no bladder/bowel control due to his
spinal cord injury. For now, he is ok with diaper drainage. I don't
expect that he will like this for too much longer, peer pressure being what it
is. His urologist has explained to Kalib the procedure of catheterizing
himself. Kalib is not quite ready for this yet. I remembered a
coloring book I had gotten from somewhere a few years ago about self-cathing.
I found it. It's called TOOBIE: Self-Cath Coloring Book for Boys and
Girls. It is produced by Mentor Urology, Inc. and they have a
downloadable version on their website. They also have other useful information
about bladder control. Click
here to see the site. To download the coloring book using Adobe
Acrobat Click here.
I thought maybe the information might help him understand and accept his
situation a little easier.
The Spinabifida.org website has a page devoted to Continence which explains how spina bifida affects bladder/bowel. Good clear picture and explanations.
When Kalib was born, Matthew (3 years old) had lots of questions. We took him to see Kalib when possible and explained the different tubes and machines hooked up to Kalib. Matthew took it all in and when some of our relatives came to see Kalib in the hospital, he explained to them about how that (pointing to the monitor) reads his blood pressure and told about his other machines. From day one, we put a picture of Matthew on Kalib's warmer. It was as important to Matthew to know that his brother had him with him.
Siblings of Kids with Special Needs - The Sibling Support Project is a national program dedicated to the interests of brothers and sisters of people with special health and developmental needs.
CHILDREN WITH DISABILITIES: UNDERSTANDING SIBLING ISSUES - This News Digest explores the dynamics of family life and focuses in particular on how a child's disability can affect siblings in the family. Many of the articles are written by siblings themselves.
Kalib got to go to camp this summer. Camp Esperanza is a camp for kids with or who have recently had cancer to go spend a week having fun and being kids. The staff is equipped to handle giving meds and more. There are nurses and doctors there and the camp counselors are great. When Kalib first found out he was going away for a week, he was hesitant. I told him to go and check it out and if he absolutely hated it, I would come get him. A gamble on my part, but it paid off. When he got home, he said "I didn't want to come home." He had a blast.
Click here for pictures of Kalib at camp.
Packing Tips for Sleep-Away Camp from Family.com - tips on what to pack, how to write a form letter for your child to fill in an mail to you, what to bring on visiting day.
Stick Figure Camp Fill-In Postcards - available from Morethanpaper.com
I agonized over the decision about whether or not to send Kalib to camp. Even though it was a camp for kids who have/had cancer, how many would be in wheelchairs? Would Kalib be left on the sidelines to watch other kids run and play because no one would push him? Then we were invited to an ice cream social at Children's Hospital in Dallas where we got to meet the camp counselors, talk to previous camp goers, and see some footage shot at previous camps. There was a panel of kids and parents who had previously experience the camp. They talked about their expectations of the camp beforehand and their actual experiences. They answered questions from potential camp goers. This panel was instrumental in our decision to send Kalib to camp. One of the older children talked about how a lot of kids were on the bus crying because they didn't want to leave their parents to go to camp. These same kids were crying on the way home from camp because they weren't ready to come home.
We drove to Dallas to put Kalib on the bus for camp. He was resigned to his fate, having no idea where he was going, he asked "its not a hospital is it?" No, I assured him. You'll have lots of fun there and if you're not having fun, you can call me and I'll come get you. As he sat on the bus, waiting for time to leave, the boy sitting next to him was crying profusely. Kalib looked up at his dad and asked "Is he gonna do that the whole time?" His dad explained that the boy was just scared to leave home and Kalib might try to talk to him later and make him feel better. "Oh allright", he said.
Before Kalib left, I wrote him a note and put it in his pillowcase in case he got lonely that first night. I also prepared him a form letter and pre-stamped, pre-addressed envelopes in the hopes of getting at least one letter. I got none.
I asked Kalib when he got back why he didn't write me, and he said "I just didn't have the time." I was torn between being happy that he had a good time and sad that he didn't need me.
It turns out that the campground is used by many different organizations for their summer camps, including the spina bifida camp. That means it was wheelchair accessible, including the swimming pool. Kalib swam, rode horses, performed in skits, participated in nightly hug raids, and all kinds of other things. He enjoyed himself so much at camp, he didn't want to come home. The counselors said he was a spunky, upbeat kid that enjoyed all the activities and they can't wait to see him back next year.