From FCSN Newsline
The Federation for Children with Special Needs
By Mary Castro Summers
Project Director – Family TIES of Massachusetts
Life is complicated for families of children with special needs. Marital accord, time for siblings and extended family, and finding quiet time for reflection are all emotional stressors that parents face. Another area of concern is helping children develop a strong sense of self-confidence.
Practical and financial worries are also common. Out-of-pocket expenditures for medical necessities or services, adaptive equipment, accessible housing, and an appropriate vehicle can impose deep strains on a family’s budget. Time demands and unpredictable schedules may limit work opportunities for parents. These costs are essential to the needs of a child, but how do we balance the checkbook?
Is there anyone who can help? How does a parent make sense of life and find the resources to maintain their spirits?
As parents, we sometimes wonder where to turn with the hard questions in life. Parent support networks offer a unique blend of personal experiences, practical advice, and support. This community has unique experiences: understanding a child’s complicated medical and developmental concerns, finding therapeutic services, navigating educational and social considerations, and planning for a life of opportunity and independence.
These are just some of the conversations that parents can address with others on a similar parenting road. Support groups offer an informal place to receive emotional support, guidance, and information from others with the same experience. Another term for this is peer support.
Groups operate in a variety of ways for the benefit of families everywhere. Traditional support groups meet in person, on a set schedule, and provide a safe place to share joys and concerns, seek advice and support, and offer guidance and kind words. Practical advice, from the lived experience, is a great gift for parents to share. But not all support groups operate this way.
Massachusetts D.A.D.S. is a proud affiliate of the Massachusetts Down Syndrome Congress. D.A.D.S. brings together fathers of children who have Down syndrome. The network focuses on action. Members play together, strategize about IEPs, talk about difficult medical concerns, and celebrate their children’s successes. D.A.D.S. support each other at Special Olympics events, family events like Fall apple-picking trips and fundraising walks, and over dinner at periodic meetings in local restaurants.
Friendships forged through Massachusetts D.A.D.S. ensure these fathers understand the breadth of needs for their child and families, and know they are not alone in their journey. Their families are aware of MassHealth benefits and resources to support their children’s needs, feel empowered to request needed services, and engage in meaningful conversation to improve school outcomes. New members are always welcome!
Courageous Parents Network provides online support and guidance to families of children with serious medical conditions. Founder Blyth Lord is a bereaved parent and pediatric palliative care advocate. Lord dreamed of providing families and service providers with a place to explore difficult life questions with other families balancing the often exhausting roller coaster of emotions with memorable, poignant moments of love, courage, and joy.
Its website offers a comprehensive video library with more than 20 themes, each with psychologist and parent interviews to address related issues and feelings. The Parents Blog offers a venue for personal reflections on any aspect of this parenting experience. A comprehensive list of resources guides parents to support services. With CPN, parents are empowered to face their children’s difficult journey with knowledge, skills, and hope.
Two years ago, a small support group first met in Cambridge, Massachusetts. Known as Habesha, its parent members immigrated from the Horn of Africa, specifically Eritrea and Ethiopia. Most parents are caring for children with complex medical needs. They talked about their challenges in caring for the health, educational, and social needs of the whole family in the United States. Complicated schedules, winter’s cold, and medical situations forced the group to shift to monthly conference calls, with quarterly in-person meetings in the Boston area.
Parents expanded their network with friends from out of state. Membership has grown to 40 families, including from Somalia and Kenya. Topics are chosen by members’ need. Topics include managing challenging behaviors among children with Autism Spectrum Disorders, compassionate care for children who have chronic pain, balancing life demands, emergency preparedness, and appreciating their children’s place in their lives and each other’s support. Learn more about Habesha from local group leader Sara Asmerom at Family TIES of Massachusetts: firstname.lastname@example.org.
The Federation for Children with Special Needs hosts a support group for Brazilian parents in the Boston area led by Rhea Tavares Smith, Outreach and Training Specialist for Portuguese-speaking parents. Group members are committed to each other, the emotional support they share, and the practical skills that enhanced their lives. The group continues to grow. Their dedication was clear at the recent Visions of Community conference, when 40 members enjoyed a day of learning and togetherness.
This success is a tribute to Rhea’s spirit and the importance of finding emotional support for parents of children with special needs. Contact the Federation’s PTI to learn more and join the group: 617-236-7210, Ext. 329.
The Family TIES Parent-to-Parent Program connects families who have similar parenting experiences around special needs. The P2PUSA network has expanded our capacity to support families of children with rare genetic conditions and less-common or complex medical needs. Call to learn more about finding emotional supports: 800-905-TIES (8437).