Published: 02/27/2014 in LA Parent’s Your Child With Special Needs Newsletter
by Brian Roper, Ph.D.
Read the article on the LA Parent website
For human beings, childhood lasts a very long time. Born with just the basics needed for survival, each of us has much to learn toward becoming a contributing member of society. The family plays an incredibly important role in a child’s development, and this holds true regardless of the child’s developmental status. The family is not just the people you live with, but the gateway to how a person views and deals with the world at large.
As the rates of autism and other neurodevelopmental disorders continue to rise, it is not just individual children who are affected, but entire families. While this seems obvious, it often gets overlooked. This may be because most of the intervention focuses on the child with autism. The array of services for a child with a developmental delay or diagnosed disorder can be staggering. There is applied behavior analysis, speech and language therapy, occupational therapy, Floortime services, music therapy, appointments with the developmental pediatrician, neurologist, gastroenterologist and more. But since so much of the wellbeing of a child with developmental issues is tied to the wellbeing of the family as a whole, it is vital that the health of the entire family be addressed.
Here are support and service tips for families of children with special needs:
Get a financial planner!
It is expensive to raise a child. It is really expensive to raise a child with special needs. A recent study out of Harvard, Boston Children’s Hospital, Massachusetts General Hospital and the University of Michigan Health System found that healthcare costs for families with children with autism were on average $3,020 higher than those for families with neurotypical children. Further, non-healthcare costs averaged $14,061 more per year, and yearly educational costs were $8,610 higher. With everything else a family with a child with special needs has to accomplish in a day, someone with expertise in mapping out a family’s financial health is essential. As a clinician working with children with special needs, I devise therapeutic goals for each of my patients with an eye toward what that child might need in a year, five years and 10 years. That same eye to the future is important to apply to the family. As a child with autism or any other special needs ages and moves toward adulthood, considering their financial future is vital. It can be very uncomfortable, but, a good, sensitive advisor can take a family through the process and give parents a sense of security that their child’s needs can be met down the line.
Make time for parent support groups.
There is strength in numbers. There is also support. Each family’s experience is different, but having a forum with other parents and caregivers who share the common thread of caring for an individual with autism or other special needs can lead to a strong network of support. Informal support gatherings or more formal programs led by a qualified professional can facilitate stress reduction and education. Vista’s parent support grouphttp://www.vistadelmar.org/parent-support/ focuses on stress reduction, using proven clinical intervention techniques. Families coming together can be a potent way to avoid isolation and share information.
Don’t forget siblings and their needs.
The brothers and sisters of individuals with autism and other developmental disorders face a unique set of issues that most of their peers will never experience. Their sister or brother might not speak. For those who can, they might be internalized and not seek the kind of relationship that the typically developing sibling expects.
As young children, the siblings of children with ASD and related disorders might not understand why their sister or brother behaves the way they do. The relationship can be even more perplexing when it is their older sibling who has special needs. As the sibling of a child with autism gets older, they might wonder why they are able to do things that their older brother cannot and why they have so many “teachers” to help them. Some individuals with autism can manifest aggressive behaviors. When these behaviors occur, typically developing siblings can be on the receiving end of one of these outbursts. Even though such outbursts might not be deliberately targeted at them (the sibling might just have been in the wrong place at the wrong time), it sure can feel like it.
Autism Society of American (www.autism-society.org) recommends that as parents of children with ASD or other developmental issues come to know their child and his or her condition better, they educate the siblings as well. It is possible for siblings on both sides of the developmental road to forge a bond that is uniquely their own. It might be beneficial for siblings to periodically attend therapeutic services to learn how to better understand or communicate with their brother or sister with ASD. Therapy works when everyone is on the same page. The more affected and unaffected siblings can successfully interact, the stronger the family becomes as a functional unit.
As siblings enter adolescence, support groups can also be a powerful resource for dealing with the stress of growing up. To better serve our own families, Vista is introducing a therapy group that provides counseling and coping strategies for siblings of children with ASD and related disorders. Other organizations might offer similar programs to help siblings process emotions and develop solid coping strategies.
When a family is busy with trying to simply get through the day, it is easy to get isolated – not just from friends and family, but from a greater community that is working to better understand autism and other neurodevelopmental disorders. Organizations such as Autism Speaks and Autism Society of Los Angeles work to bring awareness and action to the autism community. Being a part these organizations can not only galvanize a family, but also provide a wider web of support and a chance to be part of a larger dialogue.
Participation does not have to be solely with the large organizations championing the cause of individuals with special needs. So much of autism spectrum disorder remains a mystery. In my career, I have encouraged families to learn about research and consider volunteering if they choose. Volunteering in research does not have to be a big affair. It can be as simple as being a subject in a doctoral student’s dissertation study or answering the call of a nervous young assistant professor with great ideas who is marching toward tenure. I am thankful every day for the families who participated in my own dissertation study, so that I might enjoy the career I have today.
The nuclear family is a fantastically important factor in the development of a child. The child with ASD or other special needs is no different. When the family is supported, the child is as well.
Brian Roper, Ph.D., M.S. CCC-SLP, is Director of CBI Programs at Vista del Mar Child and Family Services in Los Angeles, which provides comprehensive, family-centered social, educational and behavioral health services for children and families.