As a pediatrician taking care of many kids with special needs, I realized early on that I wanted to help parents not only with their health care needs, but also with their unique needs that extended way beyond the four walls of the hospital. Parents often asked me about activities and resources for their children. I listened to parents share their stories about a how a trip to the local rec center could become intimidating, or how a trip to the park could end in disappointment as they realized they couldn’t use many of the typical playground toys.
As I started to look for these resources for the families in my office, I was amazed at the diversity of resources for kids with special needs, and the dedication of organizations and groups in the community. In 2010, as part of a national project, we started a local CAP4Kids website, where parents could find resources for their kids with the click of a button. CAP4kids also sends out a monthly e-mail newsletter that features local events and opportunities in the community.
Here are some tips that families of kids with special needs have found helpful.
Find a Mentor Have you ever wanted to talk to someone who has walked in your shoes? Connect with a mentor who has already traveled the road you are just starting down. Mentors can be a shoulder to lean on, an ally in advocating for your child, and an asset in navigating a very complicated health care system. These programs exist to help parents, siblings, foster parents, grandparents, self-advocates and anyone who has a family member of any age with a disability or special healthcare need. Families of kids with special needs are often matched with a family who has a child with a similar diagnosis. Family members may reach out to learn more about assessments and treatments, talk through barriers, gain advice about transitions in life, and obtain general support. Start here for a list of local, statewide and national organizations: Mentoring Programs.
Reach Out to Support Groups With the good days come the bad days. Everyone needs downtime, and there is power in knowing that others out there are going through the same steep learning curve. There are many regional and local support groups, even for rare disorders. Some groups meet locally, whereas other groups are nationally recognized and allow kids to share and communicate online with others going through the same experiences, in a safe and positive environment.
Stay Active Simple activities can help advance a child’s motor and developmental skills, while having fun at the same time. Local rec centers and sports leagues are not always very accommodating to kids with disabilities and special needs, however. Columbus has many unique opportunities for kids with special needs to play soccer, hockey, gymnastics, baseball and more. For example, the Miracle League baseball field in Dublin was specially designed to eliminate barriers for kids who are visually impaired or wheelchair restricted. CAP4Kids has an entire section devoted to fun and recreation for kids with special needs.
Take a Break We are often on-the-go, and nobody can care for a child completely on their own. Ask for a break! Sometimes we need to take a break to put everything in perspective or gain some much-needed rest. CAP4Kids has a section of resources for families who need a short break from care giving (respite care). Respite programs range from summer camps to adult weekend retreats and crisis care services. ARCH is a national network focused on helping families locate respite services.
Advocate Many opportunities exist for families to become a powerful voice for their children at the local and national level. It often starts in the school. Access to special education services is protected by law, but parents should never be afraid to ask pediatricians for help in initiating and supporting these services. Parents of kids with special needs often have an amazing ripple effect – they educate those around them, then those people educate others.
Emily Decker, MD, is an assistant professor of pediatrics in the Urgent Care and Primary Care Clinics at Nationwide Children’s Hospital. She has a strong interest in child advocacy, and serves as the medical director for CAP4Kids Columbus.
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