For families who have received a special needs diagnosis, building a care team and creating your village are all critical steps in getting your child a head start on the care they need, while also helping to prevent burnout. As every child has a different path, here are some basics on navigating the process.
Talking to Your Doctor
The first step is to fully understand your child’s diagnosis and discuss options with your pediatrician or other care provider. There will be a lot of information, so be sure to take notes or ask your physician if you can record audio of the appointment to refer back to later. Don’t be afraid to ask for an appointment without your child present if that will help cut down on your distraction, and ask questions such as:
-What are trusted resources to find out more about what this diagnosis means?
-What sort of therapy or additional medical attention should we be looking into?
-Do you have recommendations for therapists or other providers?
-When we have questions, what is the best means of communication?
It’s always acceptable to ask clarifying questions, schedule a follow-up appointment or seek a second opinion.
With this information in hand, you can work with your doctor to identify the members of your child’s care team—therapists, case workers or other medical staff. Your physician should have recommendations for these professionals. However, don’t hesitate to call around to private practices to find the professional that best aligns with you and your child. Many have multiple specialties in one practice.
Be sure to understand which providers and therapies are covered by your insurance before working with them. Often, you can enlist the team at your therapist or physician’s office to appeal to insurance companies in the case of a denial, or work to ensure necessary therapies and equipment are covered.
Finding Support
Beyond your doctor’s office there are so many resources for families to find care, depending on your family’s needs. Find diagnosis-specific groups like the Autism Foundation, Milestones Autism Resources or the Down Syndrome Foundation of Northeast Ohio, as well as organizations like Connecting for Kids in Westlake, or the Arc of Northeast Ohio, Livespecial.com who can help families connect with each other as well as access or find services.
The local county boards of developmental disabilities and Ohio’s Help Me Grow Program’s medical professionals, coordinators and therapists can also provide guidance, in-home therapy services, developmental screenings and connections to a myriad of community resources.
“Help Me Grow Early Intervention serves families with children, birth to age 3, who have developmental delays or disabilities,” says Karen Mintzer, the director of Bright Beginnings, an organization that partners with Help Me Grow Early Intervention in Cuyahoga County.
“No diagnosis is needed for a family to be referred to Help Me Grow and anyone can make a referral—from a physician, to a friend, a caregiver or the family themselves.”
Anyone in Ohio can reach out to Help Me Grow for assessments, connections to in-home therapy and so much more. New parents who are concerned about their child reaching milestones, or families whose children have already been diagnosed with a specific disability can all receive guidance through this program.
“Families with concerns about their child’s development, as well as children who have a medical diagnosis or developmental delay should be referred to Early Intervention (EI); (it) can address all types of concerns, including physical development like crawling or walking, speech delays, or social interaction, like playing with other children,” Mintzer says.
Mintzer adds working with a dedicated coordinator is a key part to helping parents stay organized in the face of a complex phase.
The service coordinator can serve as a critical part of your village, but it’s also important to know who else makes up your team. Asking for help is difficult, but creating a system where you can care for your child without burnout is critical.
It’s OK to Ask for Help
Take time to make a list of all the tasks related to caring for your child, both medical and not. Try to identify some items that are either impossible to do without support, or would be easy to delegate to a friend or family member. These jobs can be a one-time-help, like picking up a sibling from practice, or staying with your child while you run errands. Friends can help meal plan, meal prep, or even just fold socks.
Small tasks can make a big difference and leave you some mental clarity for the larger issues that come up.
Navigating a diagnosis can be disorienting and scary for families. Creating a clear picture with a physician, identifying specific needs, finding the right resources to help, and calling your village in to help will all go a long way to not only supporting your child, but creating a sustainable routine for years to come.
