In Our Own Words
Writings by Children and Young Adults
with Disabilities or Medical Issues
Commentary
by Varsha Daryanani
I remember the days before I had my first baby. Life was straightforward then...I had a great job, I was happily married and we had the luxury of being able to travel to exciting places. Fast forward to today and my life has changed 180 degrees. I have a different job now--I am a full-time mom to a special needs child.
Raising a special needs child has brought tremendous challenges to my daily life. I've had to learn about medical issues that I didn't even know existed, I've had to fight for my child's rights to medical care and I've had to accept that my life with a special needs child will never be "normal." We will always get people staring at us while we walk through the mall, we will always plan our lives around whether our daughter can join us in extra-curricular activities and we will also have to deal with insensitive remarks from those who don't know any better and ask questions like "What's wrong with her?"
This Month's Focus: In Our Own Words
Being a Teenager with Cerebral Palsy
by Erin
I would be lying if I said that being a teenager with cerebral palsy was a "walk" in the park. I have my dark days. The days where I want to slap life in the face, and ask why it is so brutally unfair. Some days I question what the point of even living is. Some days the sky is permanently dark grey, a cloud never to be lifted.
I would also be lying, however, if I said that being sixteen with cerebral palsy was all doom and gloom. For the most part, I enjoy life. I have hobbies that any other teenager has, such as listening to music, hanging out with friends, and gossiping about that hot guy that works at the local Subway. Sometimes, though, people don't see me as "one of them." They see me as "the poor girl in the chair" and treat me like I'm stupid, or five. I could get offended by this ignorance, or I could simply laugh it off and continue with my day. I prefer to choose the latter. It's much easier, and it brings a smile to my face.
Young Children's Voices
Note: The following essays were written by children ages 3-6 about their medical issues or disabilities. We have corrected spelling and punctuation, but otherwise left the essays as they were originally written.
Jack G.'s Story
Jonathan Z.'s Emerging Words
Nitara S.'s Interview
Laura B.'s Story
Sharmiki's Story
by Sharmiki Byndum
Hi. My name is Sharmiki Byndum and I'm in a wheelchair because I can't walk. That makes me feel separated from everyone else. I try not to let it stop me from doing what I feel is a part of my daily life.
Sometimes it's hard for me to imagine myself being pushed around to get to places. I just want to tell the world what it's like to be in a situation where I have to depend on other people to feed me and get me ready for things. I just feel upset. I know that it's part of my disability but as a young adult I just feel like why is this happening to me.
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Sibling Stories
Note: The following essays were written by children ages 5-9 about their siblings or relatives, all of whom have medical issues or disabilities. We have corrected spelling and punctuation, but otherwise left the essays as they were originally written.
Hannah G. about her brother Caleb
Hannah L. about her brother Jake
Griffin J. about his brother Reese
Melanie G. about her sister Kendra
Erin Z. about her cousin Elyse
Abi S. about her sister Nitara
Note: The following essays were written by children ages 5-9 about their siblings or relatives, all of whom have medical issues or disabilities. We have corrected spelling and punctuation, but otherwise left the essays as they were originally written.
Hannah G. about her brother Caleb
Hannah L. about her brother Jake
Griffin J. about his brother Reese
Melanie G. about her sister Kendra
Erin Z. about her cousin Elyse
Abi S. about her sister Nitara
Specialty Articles
GI and Nutrition
Strategies for Preventing or Reducing Parenteral Nutrition-Associated Liver Disease
Liver disease resulting from long-term parenteral nutrition (PN or IV nutrition) dependence is an unfortunately common side effect of this life-saving treatment, especially in babies and young children. While many cases of liver disease cannot be prevented with current medical techniques, there are many steps that can be taken to reduce the effects of parenteral nutrition on the liver.
We have just begun confronting these issues with our daughter Karuna, who has been 100% dependent on parenteral nutrition for the past two years, and whose liver function tests moved from normal to three times normal or greater over the past six months. While we are unsure of the magnitude of liver disease at this time, we have begun to research the options available to reduce or even reverse parenteral nutrition-associated liver disease. The following lists represents some of the suggestions currently recommended in the medical literature.
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GI and Nutrition
Formulas Part I: Commonly Used Formulas
This article is a two-part series that discusses formula options for children with special healthcare needs. Part II will appear in July and will focus on specialized formulas for less common conditions.
Children of all ages who are tube-fed or who have any variety of conditions, including feeding problems, food allergies/sensitivities, or failure to thrive, often require the use of formula as part or all of their diets. This article will provide an overview of some of the most commonly used formulas currently on the market.
Formulas Part I: Commonly Used Formulas
This article is a two-part series that discusses formula options for children with special healthcare needs. Part II will appear in July and will focus on specialized formulas for less common conditions.
Children of all ages who are tube-fed or who have any variety of conditions, including feeding problems, food allergies/sensitivities, or failure to thrive, often require the use of formula as part or all of their diets. This article will provide an overview of some of the most commonly used formulas currently on the market.
Feature
Education
Lekotek and Other Toy-Lending Programs for Children with Special Needs
The most important thing a child can do is play. Play is a catalyst for development in all areas, ranging from large and fine motor skills to social/emotional development and communication. Pushing buttons on toys, painting, interacting with other children, and participating in sports activities are just a few of the many ways that play helps children to develop skills, become more independent, and learn valuable life skills.