Parenting Articles

/Parenting Articles

Calling Parents, Children, and Teens with SBS!!!

Dear SBSF Member,   Are you a parent, child, or teen? We would like to invite you to help us support the development of a new SBS patient-reported conclusion survey for patients diagnosed with short bowel syndrome (SBS) in the pediatric ages. We encourage the parents to fill out the survey as a proxy to [...]

Online Support Groups to Follow

61% of Americans turn to the internet for medical advice. while there is an abundance of healthcare information on the internet, many patients look for something more, such as an emotional connection. These connections are found through online support groups. In fact 1 in 5 online users have gone to the internet for support for [...]

When Even the Doctors Haven’t Heard of Your Child’s Rare Disease

By Mia Carella Today is Rare Disease Day. According to the National Organization for Rare Disorders, the main objective of this day is “to raise awareness with the general public and decision-makers about rare diseases and their impact on patients’ lives.” After reading this article, please take a minute to think about families in your life [...]

How Parents Can Make Inclusive Education Better for Children With Disabilities

By Samantha Milne One of the problems I faced was that many learning support assistants are used to working with students who have learning difficulties, not a physical disability. My first piece of advice to any parent is to ensure the school knows about your child’s health and disabilities and how they affect them. Make [...]

Why I Won’t Sugarcoat My Family’s Medical Challenges on Facebook

By Stephanie Rasmon I share these things because this is who we are. I can’t, nor will I, sugarcoat our lives because that is not our reality. I can’t apologize for using Facebook for its purpose of connecting to loved ones, friends, and bringing strangers together. I suppose I could not share our challenges and [...]

To the Parent Who Helped Encourage My Son With a Disability

By Stephanie Rasmon As he finished his episode of frustration and we slowly made our way to the ramp, we met you and your daughter walking down the ramp. As a bit of encouragement for my son, I pointed in your direction and said “See! That’s where we go to go play.” Without any hesitation, [...]

When They Wheel Your Child Back for Surgery

By Elise Free The anesthesiologist comes in. He asks the questions you know by heart. You run through the list of prior surgeries and procedures and sense for a moment a look of sadness in his eyes. He knows women like you. Mothers like you. They are all the same, listing like groceries, their child’s [...]

What Being Rare Means To Us

By Kari Olavson: Contributor to The Mighty "Being rare means that people will learn from you. It’s not all bad. Yes, being rare is difficult, but it presents us with an opportunity to educate our peers, especially when we see another family swirling around in the pool of some seizure disorder or a developmental delay, and we can reach [...]

Caring for your Short Bowel Syndrome

Taken from www.shortbowelsupport.com Tips for caring for yourself as a caregiver When caring for someone with a chronic condition such as Short Bowel Syndrome, it’s important to maintain your own health and well-being, too. Here are some ways you can take care of yourself: Enlist the help of others Surrounding yourself with a support network [...]