Learning that a child has a developmental disability can be a life-changing moment for the family. For many, it marks the beginning of a journey into a maze of emotions, information, relationships and services that, in time, may very well become the new “life as usual.” It’s a time in which you as a parent, grandparent, sibling or any other important person in the child’s life may start to examine the lens from behind which you view abilities, success, hope, love and happiness.
If you have a loved one who has just recently been diagnosed with a developmental delay or other label, please know that you are not alone. There are many other families and professionals who will walk with you on this lifelong adventure. Below are what we believe are strong recommendations for those parents who have just learned that their child has a developmental disability.
Embrace the vow
A plethora of reactions may come with the initial diagnosis: denial, anger, fear, disappointment, guilt and confusion, to name a few. The under-the-surface chaos that often accompanies any disruptive health-related diagnosis often leads parents to immediately don their hardhats and engage in “fix it” mode. By throwing themselves totally and completely into supporting their child’s current and future needs, caring parents may run the risk of neglecting their own self-care.
It’s important to remember that you and your significant other — your husband, wife or domestic partner — must not take your relationship for granted. Often, parents have contrasting perspectives with regard to intervention, which, if not addressed, can really impact their relationship.
According to a study conducted by the University of Wisconsin, divorce rates among parents of children with autism had nearly a 1 in 4 chance (nearly 24 percent) of divorce compared to parents of children with no developmental disability (divorce rates were about 14 percent).
While many marriages and domestic partnerships are strong enough to withstand the stressors of raising a child with a developmental disability, the statistics strongly suggest that parents must take special care to protect their marriage and preserve the shared commitment to the relationship. Whether you seek couples counseling, professional resources to help you formulate a reasonable intervention strategy, family counseling services, or simply make the time to nurture one another, it is important to focus time on your relationship.
As with any parenting role, no one promised that it would be easy to negotiate balance in your life. Yet, it’s even more essential for parents whose child has special needs. With work demands, obligations to your other family members, and the needs of your child, you must strive to maintain “you” time. Beyond a doubt, it is crucial that you cultivate and expand your system of natural supports for respite. Many families with a child (or children) with developmental disabilities end up with a network of paid providers and professionals dedicated to serving their needs.
But, all too often, nothing else. This is why you should reach out to friends, family and organizations of which you are a member to enhance your network of support and respite care (temporary care arrangements that give you and other members of the family a short break).These resources enable you to set aside personal time to exercise, read a book, or pursue interests, hobbies or pastimes without shame or guilt.
Remember this: You’re human. Setting reasonable expectations of yourself and your child will greatly reduce stress and keep you energized to support your child long term. It is OK to seek help through other family members or friends and it is crucial to tap into the myriad supportive services that are available to families of developmentally disabled children (see below for more details).
The life spectrum of your child’s needs will be expansive and daunting. This is why engaging a mental health specialist should be among your first steps. What kind of behavioral issues can you expect and which providers offer unique specialties to help them? What types of testing — IQ, neuropsych, adaptive functioning, for example — will your child need? What types of special education are available, and where are these programs? What associations and advocacy groups can you access?
These questions and many more will surely arise and seeking the support of specialists will help provide direction and clarity during these challenging times.
Dealing with grief
It’s often tempting to overlook your own emotional and mental health needs, with your child requiring so much. Studies, however, clearly demonstrate that parents need to take care of themselves early and often. Seek out help with a qualified counselor, especially ones with integrated experiences serving families with developmentally disabled children. These professionals offer a distressed parent an outlet to express their concerns, address the many issues they’ll encounter and brainstorm strategies to best cope with the inevitable challenges a developmentally disabled child will present.
In addition to learning coping skills, approaches to self-help, and strategies to adjust to life with a developmentally disabled child, mental health professionals are also a wellspring of referrals. Not only can these professionals direct you to specialized mental health services county and state-wide, they can also help you identify a host of other exceptional supportive services.
Support and advocacy groups such as the Developmental Disabilities Administration, King County Developmental Disabilities Division, the Developmental Disabilities Program of Pierce County, and The Arc, among others, offer superb, sustained support to families. The goal of these organizations is to surround families and individuals with enriching social supports, educate them about their (and their child’s) civil rights, help them integrate into their communities, and lead lives as normally as possible. To learn more about these and many other resources available to parents, contact a community mental health organization regionally.
It takes a village
Though your challenges are unique, it bears remembering that you are not alone. While the groups listed above will provide a wide array of supports, offer active engagement and promote a strong sense of belonging, there is also an expansive tapestry of civic and parent-support groups that will assist in your community integration wherever you live. There is ample evidence to support the role that social inclusion plays in improved mental health outcomes.
As part of a community-focused strategy, then, parents should tap into civic groups. These groups promote valuable interactions beyond therapeutic support systems, offer both the parent and child pure social outlet and, because they may include interactions with other members of the community, promote better understanding and tolerance for people with developmental disabilities. Below is a sampling of organizations that host community activities worth consideration:
- Outdoors for All
- Northwest Center
- Boys and Girls Clubs
- Community Centers such as The Northwest Center Child Development Program, The Highland Community Center, and Washington Special Olympics
- Day, kinship care and respite programs such as Lifespan Respite Washington and Kinship Caregiver Support Program
- Parent support groups such as the various chapters of Parent to Parent, Washington PAVE, Washington State Fathers Network, and Parent to Parent Power
As your support network grows, you’ll learn of even more resources that are available.
Step by step
Having a child with a developmental disability isn’t easy. For most parents, their child’s diagnosis can an overwhelming event that gives rise to many questions, and as many extreme emotions. Feelings of distress, confusion and isolation are not uncommon. But parents should know that they do not have to take the journey unaccompanied. An organized, dedicated and expansive ecosystem of behavioral health, community and advocacy organizations exist to offer a wide array of support, guidance and resources. Whether its marriage counseling and respite care or programs specifically designed to help your child grow into a valued member of the community, there are more resources available now more than ever.
Finally, a familiar axiom comes to mind: The squeaky wheel gets the oil. Parents who engage the community, tap into resources and become effective advocates for their child tend to succeed at getting better support, improved outcomes and greater satisfaction out of their lives. Get out, get active and find a way to engage an entire community that awaits you. For those who do, they’ll not only find support, they’ll discover themselves and unearth a strong sense of purpose.