Resources For Children and Teens

Hi! We’re glad to have you visit our site! You’re probably here because you are looking for some answers, or maybe just want to find out if someone cares. Do you or someone you know have a neurologic disorder (nervous system disease)? If so, we’ve got information that can help you understand a little more about what’s happening with you,your friend or family member.

Let’s start with some basic things. The brain and spinal cord make up the central nervous system, and connect to the nerves (which are the peripheral nervous system) which activate our muscles and control all the workings of the body. When something goes wrong with a part of your nervous system (or with your muscles), you can have trouble moving, speaking, swallowing, breathing, or learning. You can also have problems with your memory, senses, or mood.

If that’s been your experience, you’re far from alone. There are more than 600 neurological or neuromuscular disorders, and 1 in 6 children or adolescents have a condition such as Autism, Epilepsy, Cerebral Palsy, Muscular Dystrophy or ADHD.

A great way to really understand neurologic disorders is to learn all about your brain and nervous system. We recommend that you visit KidsHealth, which has a fun website that teaches just how your brain and nervous system work. While you’re there, don’t forget to play a few games or watch a movie about kids like you!

If you’re a teen or young adult, you may want to learn more by going to our What is a Neurologic Disorder? page or, if you’re looking for information about specific diseases, you can check out our Disorder Directory found on the Patient/Caregiver portal.

What about if you’re a teen or young adult with a neurologic or neuromuscular condition and you’re thinking about college or living on your own? Then you need to talk to your doctor or caregiver about health care transition. This is the process of getting ready for health care as an adult.

During childhood, parents or caregivers usually help with your medical needs—they call for doctor appointments, fill out forms, and keep track of your medications. As you get older, though, you become responsible for managing your medical needs. To do that successfully, you need an organized process for gaining independent health care skills, preparing for an adult model of care, and transferring to new providers. There are several steps you can take to make sure the transition to adult health care goes smoothly.  Learn more by visiting GotTransition.

There are more resources for kids, teens, and young adults too:


Medikidz225_225Do you like comics?

Our friends at Medikidz have an entire comic book collection starring real kids who have neurologic disorders or other medical conditions. In this one, a boy named Jack explains epilepsy. You can check out all the comic book titles by visiting the Medikidz website.


track it

 

Want to use an app to track your seizures?

Check out Seizure Tracker. www.seizuretracker.com

 


BrainGamesCurious about what makes you…you?

Hailed by critics as “tremendous fun” that “makes science entertaining,” Brain Games, a television series by National Geographic, turns your mind’s eye inwards for a fascinating journey into the three and a half pounds of tissue known as your brain.

channel.nationalgeographic.com/brain-games


Terrill Foundation Scholarship

Off to college and have a neurologic or neuromuscular condition? The Terrill Foundation provides scholarships for students affected by brain injuries, brain tumors, and other neurologic diseases.

www.terrillfoundation.org


Sibling Support Project

Sibling Support Project thinks young sibs rock. Check out their SibShops program or read books and essays by and about young sibs.

www.siblingsupport.org/special-message/a-message-for-young-brothers-and-sisters


SmoothMove

SmoothMovesYHT  is a teen health promotion website. The information on this site is developed from evidence informed guidelines (what the experts say), transition research (what the research scientists discovered), and recommendations from organizations (important expert groups) such as the National Alliance to Advance Adolescent Health, Society for Adolescent Health and Medicine, the U.S. Maternal and Child Health Bureau, and the American Academy of Pediatrics.


SickKidsG2G

The Good 2 Go Transition Program has many tools and interventions available online to help youth and their families become better prepared for the transition to adult life.  Their menu of tools designed for young people and their families is found on their Transition Tool page. Many of these can be accessed or downloaded and used on your own right now such as:

Transition Readiness Checklist – Patient Version

 


CHOP

 

The Children’s Hospital of Philadelphia (CHOP) runs several programs to support patients who are getting ready to transition to adult healthcare and adult life.

 

 

Transition to Adulthood Program Health Resources: A robust compilation of documents and videos for teens and caregiver.

Transition to Adulthood Program Event Listing: Live interactive online events for teens.

REACH: These free programs, called REACH (Rapport, Empowerment, Advocacy, through Connections and Health), are for young people with chronic conditions and their parents.

REACH’s mission is to prepare youth 14 to 24, with special healthcare needs, for a successful transition into adulthood by providing peer support, guidance and resources.

  • REACH for College – These sessions focus on the medical and social transitions necessary to plan for and navigate college life successfully.
  • REACH for Independence – In these sessions, caregivers and youth will participate in activities and discussions about learning to navigate the adult healthcare system and promote healthcare independence.
  • REACH for the Future – These are workshops for young people with an autism spectrum disorder. Parent and self-advocate mentors will share their experiences and advice on planning for adult life.
  • REACH Mentors – Undergraduate and graduate student mentors are invited to share their experiences about living successfully with a chronic illness during college.
  • REACH Your Potential – This is a workshop for young people with an intellectual disability. Parent and self-advocate mentors will share their experiences and advice on planning for adult life.

Other


 University of Florida Health Care Transition Workbook for Young Adults 18+

UFlHCTransWBThis Health Care Transition Workbook will help you and your family think about your future and identify things that you are doing now to be independent in your health care. This workbook will also help you figure out what you and your family need to do to assure that your transition from child-centered (pediatric) to adult-oriented health care and to other aspects of adulthood goes as smoothly as possible.

 


Transition-Related Resources from CanChild

CanChildCanChild is housed within the School of Rehabilitation Science at McMaster University and is the hub in an academic network of international scientists that conduct applied clinical and health services research con