Welcome to Families First, the Child Neurology Foundation (CNF) e-newsletter for parents and caregivers. CNF's mission is to help children living with neurologic conditions reach their full potential. We work to achieve this daily by creating connections between patients and their families, physicians, other healthcare professionals, and industry and advocacy partners to improve quality of care and quality of life. 


The Rare Epilepsy Network, or  REN  for short, is a collaboration between the Epilepsy Foundation, RTI international, Columbia University, and many different organizations that represent patients with a rare syndrome or disorder that is associated with epilepsy or seizures.  

The REN will establish a registry of these patients which includes patient or caregiver-reported data in order to conduct patient-centered research. This research will be in the form of natural history studies and completion of surveys. The registry will also create the infrastructure for future research such as clinical trials. 

All of the research will be patient-centered, which means it will address research questions and topics that are important to the patients and caregivers with the ultimate goal of having patients and caregivers better able to participate in healthcare decisions.  You may stop participating in the research at any time.

Charlie's Teacher
A Story for Siblings!

Written by Danielle about her own  family, Charlie's Teacher is an account of her daughter's mixed emotions surrounding the time and attention her brother gets when his teacher comes for a home visit. Reading this book with typically-developing siblings is a great way to encourage them to talk with parents about their own feelings.  



The Sibling Support Project (SSP) is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns. SSP believes that disabilities, illnesses, and mental health concerns affect the lives of all family members. They aim to increase the peer support and information opportunities for brothers and sisters of people with special needs and increase parents' and service providers' understanding of sibling issues. 

 

They accomplish their mission by training local service providers on how to create community-based peer support programs for young siblings; hosting workshops, social network sites, and websites for young and adult siblings; and increasing parents' and providers' awareness of siblings' unique, lifelong, and ever-changing concerns through workshops, websites, and written materials. 

 

The Sibling Support Project has published six books, presented workshops on sibling issues internationally and in every state, but we're best known for helping local communities start Sibshops-lively peer support groups for school-age brothers and sisters of kids with special needs. There are now 450 Sibshops in most US states and Canadian provinces and in eight countries. 


They sponsor the Internet's largest and oldest social networking sites for siblings and other family members, including the SibNet, SibTeen, and GKSN (Grandparents of Kids with Special Needs) Facebook groups and the SibKids, SibNet, and SibParents yahoogroups. 

 

Visit their site to learn more and get involved!

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2015 Webinar Series
Child Neurology Conversations from the Parent, Provider, and Advocate Voice

New to Child Neurology Foundation services in 2015 are disease-specific quarterly webinars with presenter panels composed of a parent, a provider, and an advocacy partner.
 
With this forum, members from different  areas of the child neurology community come together for educational, collaborative discussions where the perspective of each partner in care is shared at the same time on the same topic. Each webinar concludes with a Q&A session where expert panelists answer your questions!

Our first webinar, Child Epilepsy & Treatment Options, was held on Monday, March 16. Click here to access the replay , and, please, let us know what you liked, how we can improve, and what other topics of conversation you would like to see as part of the webinar series. info@childneurologyfoundation.org 
Forgotten Siblings? 
The Impact of Neurologic Disease on Siblings

Research tells us that sibling relationships have a significant

effect on personality development. 
As children practice  conflict resolution and are able to openly express emotions such as love, anger, rivalry, and loyalty, we see their  identities blossom. So what happens when one sibling has a disability? We interviewed Danielle Boyce, mother of two and Executive Director of the nonprofit organization Infantile Spasms Community. Danielle has presented on the topic of sibling support and is the author of a book, Charlie's Teacher, for siblings of children with special needs.

 

Q: What developmental benefits do siblings experience in a family with special health care needs?

A: There are so many benefits. Some of these include increased closeness and support within the family unit, increased sensitivity, greater compassion, appreciation of their own health, greater acceptance of differences, increased awareness of the consequences of prejudice, a sense of responsibility beyond their chronological age, and a deeper knowledge of disabilities. In fact, we often see these siblings choose a healthcare profession.

 

Q: What challenges can siblings face?

A: Probably the biggest challenge for siblings is the missed time and attention from parents. Time that would normally be divided equally amongst siblings or time spent together as a family can be lost to doctors' visits, care regimens, or emergencies. Additionally, siblings may experience isolation, a burden of responsibility, or fear of the future.

 

Q: What support can parents provide siblings on a daily basis?

A: First and foremost, acknowledge that they have a right to their own life! Then, acknowledge their concerns. One mother recently told me that her son came to her mourning the fact that he'll never have a normal relationship with his brother. She hugged him and said, 'I know.' Then they found an awesome video on YouTube created by a typical brother with his special needs brother and the amazing and DIFFERENT relationship they have.

 

Another means of support is to set clear expectations for both the special needs and typically-developing siblings but also expect typical behavior from them. I share a little note my daughter wrote about her brother Charlie to illustrate this point. The note said, "Charlie is mean." Children may experience negative emotions towards their siblings, probably just as they would with a typical sibling; but, as one parent put it, "in more vibrant colors."

 

Parents should also work to address sibling concerns about the future as they arise and provide plenty of opportunities for them to obtain information as well as meet and interact with peers. And, all of these ways to support our kids are

built on a foundation of communication! If siblings feel they can talk with parents about how they feel without guilt, shame, and remorse, then they learn to accept and, hopefully, one day, embrace their situation. One-on-one time with parents can build this open line of communication and is vital in the process.

 

At the end of each day, it is important to take a step back. Celebrate every child's achievements and milestones... recitals, graduations, the first lost tooth! Remember that the parents' perspective is more important than the actual disability. Hope and humor can go a long way.

 

Finally, as a community, we need to work on increasing support for siblings. This starts by learning more about the sibling perspective by actively reaching out to brothers and sisters. We need to create more local programs for siblings, include them on advisory boards and in policies regarding families, and seek funding for sibling programs.

 



What are Sibshops?
  For the adults who run them and for the agencies that sponsor them, Sibshops are evidence of their loving concern for the family member who will have the longest-lasting relationship with a person who has a disability.  However, for the kids who attend them, Sibshops are pedal-to-the-metal events where they will meet other sibs (usually for the first time), have fun, laugh, talk about the good and not-so-good parts of having a sib with special needs, play some great games, learn something about the services their brothers and sister receive, and have some more fun.
Are Sibshops a form of therapy? Sibshops may be "therapeutic" for kids to attend, but they're not therapy. Sibshops takes a wellness perspective. They're a celebration of the many lifelong contributions made by brothers and sisters of people with special health and developmental needs.

Who attends Sibshops? Sibs, of course! Most Sibshops are for sibs of kids with developmental concerns. Increasingly, Sibshops are being offered for brothers and sisters of kids with health concerns (often at children's hospitals) and we're beginning to see Sibshops emerge for sibs of kids with mental health concerns. While Sibshops were developed for sibs in the 8-13 year-old age range, Sibshops (depending on the community) are being offered for sibs as young as six and for teens as well. 

Where can I find a Sibshop near me?   There are over 400 Sibshops in almost every state and countries ranging from Argentina to Iceland and Ireland to Japan.  To see a directory of registered Sibshops, visit the Sibling Support Project website.

Child Neurology Foundation 
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