Tuesday, July 24, 2012
Parents and Naloxone (Narcan)
Joanne Peterson is the Founder and Executive Director of Learn to Cope (LTC), which was started in 2004. She is also a parent of a son in long-term recovery from opiate addiction which begin with OxyContin. LTC, is a nonprofit organization, is a unique solutions-based support, advocacy and educational peer lead organization for family members of those addicted to opiates and other drugs. LTC has a website which provides a support forum with over 4.500 registered families locally and nationally as well as 12 chapters in Massachusetts. LTC provides peer support and education with the focus on coping with the danger, stress and emotions related to this situation. LTC provides informational resources regarding the disease of addiction and realistic strategies for treatment and recovery based on the real-world experiences of members. LTC is the first parent network to provide the overdose reversal Narcan (Nasal Naloxone) at each chapter.
The presentation had a tremendous impact on the many professionals in law enforcement, policy makers, clinicians, educators, first responders, health officials, addiction treatment providers and parents from all over the country. LTC parent facilitators participated in the follow-up discussion.
Intra-nasal narcan and training in its use is available to families every Thursday night at the LTC meeting at Salem Hospital at no cost.
Friday, June 22, 2012
The Family Resource Center is happy to announce that we are nearing our 10th Year Anniversary. We are grateful for all who have supported and continue to support our programs. Please visit our wish list and consider donating a book in honor of your child and/or family member. Thank You!
Our Behavioral Health Library is open M-F. Our hours are 10–12 for groups or by appointment, and from 12-4 for walk-in appointments. Our fax is 978.354.3777.
- Books for ADULTS, arranged by topic
- Books for CHILDREN, arranged by topic
- Attention Deficit Hyperactivity Disorder
- Anxiety Disorders
- Asperger's Syndrome
- Attachment Disorder
- Bipolar Disorder
- Child Abuse
- Eating Disorders
- Fetal Alcohol Syndrome
- General Parenting and Child Development
- Grief and Loss
- Learning Disorders
- Obsessive Compulsive Disorder
- Oppositional Defiant Disorder
- Post Traumatic Stress Disorder
- Seizure Disorder
- Self Injury
- Sexual Assault
- Sibling Issues
- Substance Use and Abuse
- Suicide Prevention
- Tourettes Syndrome
- Violence and Trauma
- Internet access
- Reference books
- Children’s books
- Brochures and fact sheets
- Current medical articles
- Neuropsychological testing information
- Information on specialty schools & colleges
- Information on specialty camps
- Education programs for parents
- Programs for educators and health care professionals
- Parent Support Groups
- Sibling Support Group
- Grandparents Support Group
- Parent Mentoring Program
Free Lectures for Parents and Professionals, every third Thursday of the month 12 noon - 1:30 p.m.
If there are any topics that you would like see presented, please contact firstname.lastname@example.org for suggestions. Talks have included:
January 16 "Joy Worthy: A Mother's Guide to More Joy, Less Stress, and No Guilt" - Julie McGrath,LICSW and Founder of the Joy Source
February 20 "Chicken or Egg: Understanding the Mental Health and Substance Abuse Connection in Youth" - James Howland, Ed.D., LICSW
March 20 "Let's Get Organized" - Debra Candeloro Northeast Parent Coordinator, Family Ties of Massachusetts
April 17 "Room to Breathe" Mindfulness in the Classroom Screening of Film & Discussion Stress Reduction Clinic Programs Staff, MassGeneral for Children at NSMC
May 15 "Cutting" Michael Tsappis, MD, Medical Director MassGeneral for Children at NSMC
December 19 "Life Coaching for Young Adults with Asperger's Syndrome and Related Conditions" - Laurie Cohen, BS, MBA Linkage Coaching
November 21 Massachusetts Department of Children and Families: "An Overview and Updates on How to Better Support Families" - Pamela Gray, LICSW, Area Clinical Manager DCF
October 17 Grandparents Parenting Again (Part II): "Strategies for Successful Parenting" - Families First Parenting Programs
September 19 Grandparents Parenting Again (Part I): "Your Role in Raising Your Grandchildren" - Families First Parenting Programs
May 16 "Shut Up About Your Imperfect Kids!, the Best Medicine for Parents of Imperfect Kids Without the Side Effects" Patricia Konjoian and Gina Gallagher, Co-Authors and Sisters
April 18 "Family Caregivers: Supporting the Social Develoment of Children while Promoting Positive Communication" Heath Gianatassio, CCLS, Child Life Specialist MassGeneral for Children at NSMC
March 21 "Assessment and Treatment of Children with Autism Spectrum Disorders" Rebecca McNally Keehn, PhD Licensed Psychologist Neurodevelopment Center MassGeneral for Children at NSMC
February 21 "An IEP for My Child: A Workshop for Parents and Professionals" - Clare Vann, Private Special Education Attorney, Federation for Children with Special Needs
January 17 "If I Could Just Snap Out of It, Don't You Think I Would? - A Nine Month Plan for Smashing your Depression" Cathy Goldstein Mullin, MSW, LICSW MassGeneral for Children at NSMC
December 20 "Mindfulness for Young Children: Playful Practices to Promote Health and Happiness" Jefferson Prince, MD & Marguerite Roberts, MS, NP MassGeneral for Children at NSMC
November 15 "Beyond Words: Supporting Grieving Children Using Creative Arts" - Maureen Forbes, MS, CCLS Children's Program Coordinator, Hospice of the North Shore & Greater Boston
September 20 "Adaptations that Help Young Children Develop Hand Skills" - Barbara Smith, M.S., OTR/L, Occupational Therapist and author of "From Rattles to Writing: A Parent's Guide to Hand Skills"
May 17 "Parenting as Partners: Engaging Dads" - Haji Shearer, Director of the Fatherhood Initiative
April 19 "Working with Traumatized Children and their Caregivers" - Gail Arnold, M.Psych, LMHC
March 15 "A RAW Approach to Youth Arts on the North Shore - Mary Flannery, Founder and Artistic Directors; Jason Cruz, Clinical Supervisor and Expressive Therapist
February 16 "Navigating the Children's Behavior Health Initiative (CBHI): An introduction to community-based behavioral health services provided by MassHealth" - Jessica Berry, Staff Attorney, Children's Law
January 19 "A Woman's Story of Determination: Understanding the importance of self advocacy and Provider Support for people with Disabilities" - Sheila Radziewicz, Self Advocate, Motivational Speaker
December 15 "Becoming familiar with (CHINS) Child in Need of Service" - Jessica Berry, Children's Law
November 17 "Stop Bullying Before it Starts: A Bullying Prevention Program" - Juvenile Justice Unit
October 20 "Sexualized Behavior in Children: Normal of Abnormal" - Edward Bailey, MD NSMC, Salem
September 15 "Trapped Inside the Beast of Obsessive Compulsive Disorder" - Cathy Goldstein Mullin, LICSW, MassGeneral for Children at NSMC
April 21 "Attachment & How it is Affected by Trauma" - Jami Zarella, LICSW; Heather Ingham, LICSW Adoption Journey's
March 21 "That's So Gay: Creating Safe Communities for LGBT Youth" - Pam Garramone, Exec Director
February 17 "Adoption: Post Legalization Speed Bumps and How to Maneuver Them" - Jami Zarella, LICSW; Heather Ingham, LICSW Adoption Journey's
January 20 "Inspiring Girls to be Strong, Smart & Bold: An Overview of Girls Inc of Lynn (Ages 6-18) - Catherine Dhingra, MS Director of Prevention Programs, Girls Incorporated of Lynn
December 16 "Childhood Obesity: What's the Big Deal?" - Edward Bailey, MD Chairman of Pediatrics, MassGeneral for Children at NSMC
November 18 "Cool Minds TM: A Mindfulness Based Teen Program" - Jefferson Prince, MD; James Howland, Ed.D., LICSW; Marguerite Roberts, MS, NP; Ivette Thomson, Research Coordinator
October 21 "Think Before You Send: Using Digital Communication Responsibly" - Mariellen Fidrych, Juvenile Justice Unit, Essex District Attorney's Office
September 16 " Hospital and Doctor Visit: Preparing your child for Healthcare Experience & Utilizing Developmentally Appropriate Coping Techniques" - Heather Gianatassio, CCLS Certified Child Life
May 20 " Pediatric Bipolar Disorder: Presentation, Assessment, Diagnosis & Treatment of Bipolar in Children & Adolescents" - Jefferson Prince, MD Medical Director & Child/Adolescent Psychiatrist
April 15 "Navigating the Social Maze: Discussing the Strengths and Weaknesses that Children with Asperger's & PDD NOS bring to Social Interacting" - Shalini Bhalla, Psy.D., Psychologist & Coordinator
March 18 "Promoting Positive Social Experiences for your Child int he Summer at Home and Camp" - Chris Anderson, Ph.D., Licensed Psychologist; George Marinakis, Ph.D., Licensed Psychologist
February 18 "Bullying Prevention: What Parents and Advocates for Children Need to Know" - Robin D'Antona, Ed.D.
Janaury 21 "Adolescents, Anger and Defiance: Normal Development, When to Seek Help" - Freddy Herreria, LMH MassGeneral for Children at NSMC
December 17 "FamilyWorks: Child and Adolescent Wraparound Services of the North Shore" - Deborah Casey, LMHC
November 19 "Head Start: The Early Childhood Collaboration of the North Shore" - Diane Curtin, MSW & Miranda Navarro
October 15 "Helping Parents Navigate the Rocky Road of Adolescents" - Marsha Finkelstein, Founder
September 17 "Drugs 101: What Adults Need to Know" - Mariellen Fidrych, Special Projects Coordinator, Juvenile Justice Unit, Essex County Attorney's Office
May 21 "Sibshops: Recreational Peer Support for Children with Brothers and Sisters with Special Needs" - Marguerite Roberts, MS, NP; Mary Dean Calnan
April 16 "Breaking the Cycle: A Former Little Wanderer" Shares her Story - Sherri Raferty, M.Ed
March 19 "Literacy Support in the Home Environment" - Kathryn Kohl, Ph.D., Literacy Specialist
February 19 "Language, Speech and Hearing: When to be Concerned" - Patricia Mauceri, Au.D.; Pamela Doring, M.Ed., CCC-SLP; Barbara Grizell, M.A., CC-SLP
January 15 "Adolescents in Recovery from Substance Abuse" - Students and Principal, Michelle Lipinski, North Shore Recovery High School
December 18 "Current Trends in Autism" - Lorraine Lacotucci, ME.d.
November 20 "NetSmartz: Educating Children on Internet Safety" - Juvenile Justice Essex District Attorney
October 16 "Neurodevelopmental Evaluations: Understanding a Child's Learning Style and Area of Strength and Weakness" - Barry Skoff, Ph.D.
September 18 "Effective Communication: Skill Building and Conflict Resolution for Parents as Members of IEP Team Federation for Children with Special Needs"
May 15 "Basic Rights - Introduction to Rights and Responsibility" - Federation for Children w/Special Needs
April 17 "Health and Wellness: Caring for the Caregiver" - Marc Fountain, SDS
March 20 "Learn to Cope: Unique Solution-Based Support and Advocacy Group" - Joanne Peterson, Founder and Executive Director
February 21 "Shut Up About Your Perfect Kid!" The Movement of Imperfection - Patricia Konjoian/Gina Gallagher Co-Authors & Sisters
January 17 "Mediation: Uses for Families in Conflict" - Rosalind Cresswell, NS Community Mediation
December 20 "Listening: The Foundation of Change" - Nancy Connolly, MS
November 15 "How to Break the Teen Cycle of Silence: SOS Suicide Prevention Program" - Lindsay Taylor, Med Program Coordinator
October 18 "Divorce: The Effects on Children" - Jeanna DeLeo, Med, LMHC Outpatient Pediatric MH
September 20 "Choose to Refuse: A Heroin and Oxycontin Prevention" - Juvenile Justice Unit Essex DA
May 17 "Dating Violence: Defining Harmful Dating Behavior in Teens" - Christopher Hall, Domestic Violence Counselor
April 19 "Educational Rights" - Bridget Kennedy, Staff Attorney Children's Law Center
March 15 "Adolescents: Gay, Straight or Questioning?" - Guy Croteau, LICSW
February 15 "Foster Care: Fostering Connections" - Carla King, Foster Parent Recruiter
January 18 "Lynn Police Department Gang Unit Education Program" - Detective Robert Hogan
December 21 "Teens Substance Abuse" - Dan Jacobs, Ph.D. Partial Hospitalization
November 16 "Bullying" - Chris Anderson, Ph.D., The Academy
October 19 "Confidentiality in Minors" - Rebecca Brendall, MD, JD Law & Psychiatry Service MGH
May 18 "Not Just Kids Stuff: Understanding Children's Grief and Loss" - Maureen Forbes, MS, CCLS
April 20 "Developing Social Skills in Children with Different Types of Disabilities" - Steve Kotsakis, Ph.D.
March 16 "Addressing Self-Inflicted Violence in Adolscents" - Dan Jacobs, Psy.D
February 16 "Childhood Sexual Assault: Trauma and Recovery" - Paula Stahl, Ph.D.
January 19 "Adoption: Understanding the Multifaceted Impact of Adoption on Children" - Clancy Paul, LICSW, Adoption Journey's
December 22 "Parenting Wisely: Parenting Skills Workshop" - Essex District Attorney's Office
November 17 "Communicating with Teens" - Patty Gardner Goodof, LICSW
October 20 "Domestic Violence and It's Effects" - Peg Tiberio, NSMC Crossroads/HAWC & Gail Arnold, LMHC
September 15 "Educational Rights" - Bridget Kennedy-Pfister, Staff Attorney Children's Law Center
Wednesday, June 20, 2012
Our team of mindfulness teachers: Jeff Prince, Jim Howland, and Marguerite Roberts previously taught the program at North Shore Recovery High School in Beverly for two semesters; the first in 8 weeks then a full semester long course four days a week. The Mindfulness program was also taught to two more classes of teens at MassGeneral /North Shore Center for Outpatient Care in Danvers. It is currently offered at NO COST for teens (14-17 years) for 8 Wednesday's. Adolescents have been referred by parents, pediatricians and providers. Many referrals come from School Adjustment Counselors. An additional benefit is for the many parents of teens taking the adult class in another area of the center; coming in together at 6:00pm on Wednesday's and learning mindfulness as a family.
The Read Family Trust has awarded the NSMC Family Resource Center another pediatric behavioral health grant, in collaboration with Salem Public Schools. The focus of the program will be to analyze YRBS results (youth risk behavior survey) and implement an SOS Signs of Suicide Prevention Program with Salem High School educators, ninth grade students, and their parents.
The focus of the project over the past few years had been twofold: first to provide analysis for previous YRBS results (Youth Risk Behavior Survey) from 2009 and 2010 which was done this year and then implementing an educational program for faculty on signs of depression and risks for suicide with the Salem High School educators and staff, ninth grade students and their parents this school year.
August 31st A professional development program was provided for faculty of the Salem High School "Depression in Adolescents" by Jefferson Prince MD.
September 22nd "Signs of Depression in Adolescents and How to Help" was presented by Jefferson Prince MD to the parents of the incoming 325 freshmen at the "Parent Back to School Night" at the High School. Resources were made available to all participants. A presentation on Bullying Prevention was also given by Robin D'Antona.
This project has been coordinated with Andrew Wulf, Headmaster of the Freshman House, David Angeramo, Principal at Salem High School and Jeanna Deleo and June Marie Kershaw, Adjustment Counselors. Given the greater awareness of students' concerns and behavioral health problems in the current environment and revealed through the YRBS, the onsite class in Mindfulness will be held Friday morning to better support the students. The pilot class is comprised of HS students either self-referred or referred by the Adjustment Counselors.
Physician Trainings in Opiate Use and Overdose Prevention
Specialized programs, available through the Lynn OD Prevention grant, are in development and will be provided to Emergency Departments, community physicians and related providers through NSMC North Shore Children's Hospital Pediatric Grand Rounds, and through Medical Grand Rounds this Fall at the Salem and Lynn campuses at North Shore Medical Center.
Smoking Cessation Program for Danvers High School Students
A pilot smoking cessation program for high school students, in collaboration with Danvers Cares and Danvers High School, is actively being designed and is sponsored by North Shore Medical Center.
Wednesday, December 28, 2011
For the young people who attend them and the energetic people who run them, Sibshops are lively, pedal-to-the-metal celebrations of the many contributions made by brothers and sisters of kids with special needs. Sibshops acknowledge that being the brother or sister of a person with special needs is for some a good thing, others a not-so-good thing, and for many somewhere in between. They reflect a belief that brothers and sisters have much to offer one another--if they are given a chance.
The Sibshop model intersperses information and discussion activities with new games (designed to be unique, offbeat, and appealing to a wide ability range). Sibshops are as fun and rewarding for the people who host them (the adults who plan them and the agencies that sponsor them) as opportunities for brothers and sisters of children with special health and developmental needs to obtain peer support and education within a recreational context. They reflect an agency's commitment to the well being of the family member most likely to have the longest-lasting relationship with the person with special needs.
Sibshops also seek to provide siblings with opportunities for peer support. Because Sibshops are designed (primarily) for school-age children, peer support is provided within a lively, recreational context that emphasizes a kids'-eye-view.
Sibshops are not therapy, group or otherwise, although their effect may be therapeutic for some children. Sibshops acknowledge that most brothers and sisters of people with special needs, like their parents, are doing well, despite the challenges of an illness or disability. Consequently, while Sibshop facilitators always keep an eye open for participants who may need additional services, the Sibshop model takes a wellness approach.
Who attends Sibshops?
Originally developed for seven to thirteen-year-old siblings of children with developmental disabilities, the Sibshop model is easily adapted for slightly younger and older children with other special needs, including cancer, hearing impairments, epilepsy, emotional disturbances, and HIV-positive status. Children who attend Sibshops come from diverse backgrounds
The Goals of the Sibshop Model
- Sibshops will provide brothers and sisters of children with special needs an opportunity to meet other siblings in a relaxed, recreational setting.
- Sibshops will provide brothers and sisters with opportunities to discuss common joys and concerns with other siblings of children with special needs.
- Sibshops will provide siblings with an opportunity to learn how others handle situations commonly experienced by siblings of children with special needs.
- Sibshops will provide siblings with an opportunity to learn more about the implications of their sibling's special needs.
- Sibshops will provide parents and other professionals with opportunities to learn more about the concerns and opportunities frequently experienced by brothers and sisters of people with special needs.
• These brothers and sisters will be in the lives of family members with special needs longer than anyone. Brothers and sisters will be there after parents are gone and special education services are a distant memory. If they are provided with support and information, they can help their sibs live dignified lives from childhood to their senior years.
• Throughout their lives, brothers and sisters share many of the concerns that parents of children with special needs experience, including isolation, a need for information, guilt, concerns about the future, and care giving demands. Brothers and sisters also face issues that are uniquely theirs including resentment, peer issues, embarrassment, and pressure to achieve.
Despite the important and life‐long roles they will play in the lives of their siblings who have special needs, even the most family‐friendly agencies often overlook brothers and sisters. Brothers and sisters, often left in the literal and figurative waiting rooms of service delivery systems, deserve better. True “family‐centered” care and services will arrive when siblings are actively included in agencies’ functional definition of “family.”
The Sibling Support Project facilitated a discussion on SibNet, its listserv for adult siblings of people with disabilities, regarding the considerations that siblings want from parents, other family members, and service providers. Below is a discussion of themes discussed by SibNet members and recommendations from the Sibling Support Project:
1. The Right to One's Own Life. Throughout their lives, brothers and sisters may play many different roles in the lives of their siblings who have special needs. Regardless of the contributions they may make, the basic right of siblings to their own lives must always be remembered. Parents and service providers should not make assumptions about responsibilities typically‐developing siblings may assume without a frank and open discussion. "Nothing about us without us"— a phrase popular with self‐advocates who have disabilities — applies to siblings as well. Self‐determination, after all, is for everyone — including brothers and sisters.
2. Acknowledging Siblings’ Concerns. Like parents, brothers and sisters will experience a wide array of often ambivalent emotions regarding the impact of their siblings’ special needs. These feelings should be both expected and acknowledged by parents and other family members and service providers. Because most siblings will have the longest‐lasting relationship with the family member who has a disability, these concerns will change over time. Parents and providers would be wise to learn more about siblings’ life‐long and ever‐changing concerns.
3. Expectations for Typically‐Developing Siblings. Families need to set high expectations for all their children. However, some typically‐developing brothers and sisters react to their siblings’ disability by setting unrealistically high expectations for themselves — and some feel they must somehow compensate for their siblings’ special needs. Parents can help their typically‐developing children by conveying clear expectations and unconditional support.
4. Expect Typical Behavior From Typically‐Developing Siblings. Although difficult for parents to watch, teasing, name‐calling, arguing and other forms of conflict are common among most brothers and sisters ‐– even when one has special needs. While parents may be appalled at siblings' harshness toward one another, much of this conflict can be a beneficial part of normal social development. A child with Down syndrome who grows up with siblings with whom he sometimes fights will likely be better prepared to face life in the community as an adult than a child with Down syndrome who grows up as an only child. Regardless of how adaptive or developmentally appropriate it might be, typical sibling conflict is more likely to result in feelings of guilt when one sibling has special health or developmental needs. When conflict arises, the message sent to many brothers and sisters is, "Leave your sibling alone. You are bigger, you are stronger, you should know better. It is your job to compromise." Typically‐developing siblings deserve a life where they, like other children, sometimes misbehave, get angry, and fight with their siblings.
5. Expectations for the Family Member with Special Needs. When families have high expectations for their children who have special needs, everyone will benefit. As adults, typically‐developing brothers and sisters will likely play important roles in the lives of their siblings who have disabilities. Parents can help siblings now by helping their children who have special needs acquire skills that will allow them to be as independent as possible as adults. To the extent possible, parents should have the same expectations for the child with special needs regarding chores and personal responsibility as they do for their typically‐developing children. Not only will similar expectations foster independence, it will also minimize the resentment expressed by siblings when there are two sets of rules — one for them, and another for their sibs who have special needs.
6. The Right to a Safe Environment. Some siblings live with brothers and sisters who have challenging behaviors. Other siblings assume responsibilities for themselves and their siblings that go beyond their age level and place all parties in vulnerable situations. Siblings deserve to have their own personal safety given as much importance as the family member who has special needs.
7. Opportunities to Meet Peers. For most parents, the thought of "going it alone," raising a child with special needs without the benefit of knowing another parent in a similar situation would be unthinkable. Yet, this routinely happens to brothers and sisters. Sibshops, listservs such as SibNet and SibKids, and similar efforts offer siblings the common‐sense support and validation that parents get from Parent‐to‐Parent programs and similar programs. Brothers and sisters — like parents — like to know that they are not alone with their unique joys and concerns.
8. Opportunities to Obtain Information. Throughout their lives, brothers and sisters have an ever‐changing need for information about their sibling’s disability, and its treatment and implications. Parents and service providers have an obligation to proactively provide siblings with helpful information. Any agency that represents a specific disability or illness and prepares materials for parents and other adults should prepare materials for siblings and young readers as well.
9. Sibs’ Concerns about the Future. Early in life, many brothers and sisters worry about what obligations they will have toward their sibling in the days to come. Ways parents can reassure their typically‐developing children are to make plans for the future of their children with special needs, involve and listen to their typically‐developing children as they make these plans, consider backup plans, and know that siblings’ attitude toward the extent of their involvement as adults may change over time. When brothers and sisters are "brought into the loop" and given the message early that they have their parents' blessing to pursue their dreams, their future involvement with their sibling will be a choice instead of an obligation. For their own good and for the good of their siblings who have disabilities, brothers and sisters should be afforded the right to their own lives. This includes having a say in whether and how they will be involved in the lives of their siblings who have disabilities as adults, and the level, type, and duration of involvement.
10. Including Both Sons and Daughters. Just as daughters are usually the family members who care for aging parents, adult sisters are usually the family members who look after the family member with special needs when parents no longer can. Serious exploration of sharing responsibilities among siblings — including brothers — should be considered.
11. Communication. While good communication between parents and children is always important, it is especially important in families where there is a child who has special needs. An evening course in active listening can help improve communication among all family members, and books, such as How to Talk So Kids Will Listen and Listen So Kids Will Talk and Siblings Without Rivalry (both by Adele Faber and Elaine Mazlich) provide helpful tips on communicating with children.
12. One‐on‐One time with Parents. Children need to know from their parents' deeds and words that their parents care about them as individuals. When parents carve time out of a busy schedule to grab a bite at a local burger joint or window shop at the mall with their typically‐developing children, it conveys a message that parents "are there" for them as well and provides an excellent opportunity to talk about a wide range of topics.
13. Celebrate Every Child’s Achievements and Milestones. Over the years, we’ve met siblings whose parents did not attend their high school graduation — even when their children were valedictorians — because the parents were unable to leave their child with special needs. We’ve also met siblings whose wedding plans were dictated by the needs of their sibling who had a disability. One child’s special needs should not overshadow another’s achievements and milestones. Families who seek respite resources, strive for flexibility, and seek creative solutions can help assure that the accomplishments of all family members are celebrated.
14. Parents’ Perspective is More Important than the Actual Disability. Parents would be wise to remember that the parents' interpretation of their child's disability will be a greater influence on the adaptation of their typically developing sibling than the actual disability itself. When parents seek support, information, and respite for themselves, they model resilience and healthy attitudes and behaviors for their typically‐developing children.
15. Include Siblings in the Definition of “Family.” Many educational, health care, and social service agencies profess a desire to offer family‐centered services but continue to overlook the family members who will have the longest‐lasting relationship with the person who has the special needs — the sisters and brothers. When brothers and sisters receive the considerations and services they deserve, agencies can claim to offer “family‐centered”— instead of “parent‐centered”— services.
16. Actively Reach Out to Brothers and Sisters. Parents and agency personnel should consider inviting (but not requiring) brothers and sisters to attend informational, IEP, IFSP, and transition planning meetings, and clinic visits. Siblings frequently have legitimate questions that can be answered by service providers. Brothers and sisters also have informed opinions and perspectives and can make positive contributions to the child's team.
17. Learn More About Life as a Sibling. Anyone interested in families ought to be interested in siblings and their concerns. Parents and providers can learn more about “life as a sib” by facilitating a Sibshop, hosting a sibling panel, or reading books by and about brothers and sisters. Guidelines for conducting a sibling panel are available from the Sibling Support Project and in the Sibshop curriculum. Visit the Sibling Support Project’s website for a bibliography of sibling‐related books.
18. Create Local Programs Specifically for Brothers and Sisters. If your community has a Parent‐to‐Parent Program or similar parent support effort, a fair question to ask is: why isn’t there a similar effort for the brothers and sisters? Like their parents, brothers and sisters benefit from talking with others who "get it." Sibshops and other programs for preschool, school‐age, teen, and adult siblings are growing in number. The Sibling Support Project, which maintains a database of over 200 Sibshops and other sibling programs, provides training and technical assistance on how to create local programs for siblings.
19. Include Brothers and Sisters on Advisory Boards and in Policies Regarding Families. Reserving board seats for siblings will give the board a unique, important perspective and reflect the agency's concern for the well‐being of brothers and sisters. Developing policies based on the important roles played by brothers and sisters will help assure that their concerns and contributions are a part of the agency's commitment to families.
20. Fund Services for Brothers and Sisters. No classmate in an inclusive classroom will have a greater impact on the social development of a child with a disability than brothers and sisters will. They will be their siblings' life‐long "typically developing role models." As noted earlier, brothers and sisters will likely be in the lives of their siblings longer than anyone — longer than their parents and certainly longer than any service provider. For most brothers and sisters, their future and the future of their siblings with special needs are inexorably entwined. Despite this, there is little funding to support projects that will help brothers and sisters get the information, skills and support they will need throughout their lives. Agencies would be wise to invest in the family members who will take a personal interest in the well‐being of people with disabilities and advocate for them when their parents no longer can. As one sister wrote: “We will become caregivers for our siblings when our parents no longer can. Anyone interested in the welfare of people with disabilities ought to be interested in us.”
© The Sibling Support Project of the Arc of the
. All rights reserved. United States
About the Sibling Support Project
The Sibling Support Project, believing that disabilities, illness, and mental health issues affect the lives of all family members, seeks to increase the peer support and information opportunities for brothers and sisters of people with special needs — and to increase parents’ and providers’ understanding of sibling issues.
Our mission is accomplished by training local service providers on how to create Sibshops (lively community‐based for school‐age brothers and sisters); hosting workshops, listservs, and websites for young and adult siblings; and increasing parents’ and providers’ awareness of siblings’ unique, life‐long, and ever‐changing concerns through workshops, websites, and written materials.
since 1990, the Sibling Support Project is the only national effort dedicated to the interests of over six million brothers and sisters of people with special health, mental health and developmental needs. Seattle
For more information about Sibshops, sibling issues, and our workshops, listservs and publications, contact: Sibling Support Project of the Arc of the
Don Meyer, Director ‐297‐6368