As a parent, you naturally want the best of everything for your child—the best childcare, the best school, the best doctors. But when your child has a special needs diagnosis that requires numerous doctors, specialists and therapists, finding the best ones that align with your values can feel like an extremely daunting task—especially right after receiving that diagnosis.
Before digging into finding your child’s care team, Heisha Freeman, founder of the Special Needs Parents of North Texas Facebook group, suggests taking some time to absorb everything, as long as your child doesn’t need immediate medical treatment. Take a beat to feel all your feelings, digest the diagnosis and what it means for your child and family, and even have a mini mourning period for the parenting experience and life for your child that you envisioned.
Now it’s time to tackle the search for your child’s providers. Here’s where to start and how to ensure the providers are the best fit for your child and family.
Utilize Your Network
First, determine whether you’re going through insurance or private pay, recommends Courtney Willis, DFWChild Mom-Approved Speech and Language Pathologist who is founder, CEO and clinical director of Speech Wings Therapy in Dallas. If you’re going through insurance, check whether your child can see out-of-network providers or if you’re limited to in-network providers only. Does your child have Medicaid? Reach out to their case worker or managed care organization and ask which providers they’re hearing great things about.
From there, talk to your community. The best referrals are going to come from someone who has been where you are, says Dr. Sara Feldman, a DFWChild Mom-Approved board-certified behavior analyst and licensed behavior analyst who owns The Helm ABA, with locations across Dallas-Fort Worth.
So find your parent community—join in-person and online support groups, talk to friends or friends of friends, search for local and national associations and nonprofits specific to your child’s diagnosis—and ask about their recommendations, insights and experiences.
Don’t forget to check with your child’s pediatrician, if you have a great one that you’re going to stay with. They’re going to know which colleagues their other patients who have kiddos with special needs like, says Lisa Roberts, a DFW area mom whose son, Luke, has autism.
Another tip to suss out if a provider is right for your child? Freeman, whose adult son Austin has autism, suggests reading online reviews, but don’t look for just the good or bad. Look for comments of the same kind. “If tons of people are saying it’s a two-hour wait to see the doctor, I have to decide, can I do that? Do I want to do that or do I need to find someone who doesn’t double and triple book appointments?”
RELATED: Raising a Child with a Rare Disease
Vet Potential Providers
If you’re looking for a new medical provider or you’re evaluating a therapist or specialist, request an appointment to have a conversation with them. Ask them questions like:
- What is your care philosophy?
- Are you open to Eastern and Western medicine?
- What experience do you/does your office have with my child’s specific diagnosis?
- How do you help children with special needs feel comfortable?
- As my child gets older, how do you envision being able to support us?
- Do you have well and sick areas in your waiting room?
- How long have you been practicing?
- What ongoing education do you participate in regarding my child’s diagnosis?
- Do you have any plans to make changes to the office?
- How soon are you planning to retire?
- Is the office willing to be flexible in procedures (like if your child needs to wait in the car or a separate room because of sensory overwhelm until a treatment room is available)?
- How do you individualize therapy/treatment to fit my child’s strengths and needs?
- How do you involve families in the process/what does my involvement (in session and at home) look like?
- How do you measure my child’s progress?
- What strategies do you use with kids who struggle with traditional methods?
- How often can/will we communicate—about my child’s progress, any concerns I may have, etc.?
When having these conversations, Roberts stresses not sugarcoating your child’s diagnosis, challenges and behaviors. You want to make sure the provider is the right fit to give your child the support they need, and the best way to determine that is through open and honest communication.
Above All, Trust Your Gut
After speaking with potential providers and visiting their offices, review their answers to your questions and reflect on your experience. Did you feel heard and understood? Did the provider seem transparent about the process or did it feel murky? Did you understand when they were explaining things? How did you feel in the office space? Did you feel comfortable asking questions? How comfortable did you feel about their answers?
Above all? Trust your gut. It’s the No. 1 piece of advice from both moms and providers. “While the medical professionals may know what’s in medical books and diagnoses and medications and all of that, you know your child better than anyone,” Freeman says. “Don’t let anyone override your knowledge of your child and what your child needs.”
Top image: iStock
