There is no way to be prepared for the mix of emotions that are felt when your child is given a medical diagnosis, especially one you are not familiar with and especially when the diagnosis is defined as a disability.
Permanence can feel overwhelming, and not understanding the disability itself (let alone treatments and therapies) can compound those feelings. Parenting is difficult enough, and unknown curveballs can make it harder.
My husband often reminds me that “Rule #1 is to know the rules.” While there are no defined rules, per se, my number one go-to when feeling overwhelmed with parenting is to first pause and take a deep breath. Whatever your thoughts and feelings are when receiving a diagnosis for your child, they are valid and individual to you and your experience. Your child, partner, and other family members may have different reactions, and while that can make everything feel more complicated, know that complex emotions and feelings are part of the process. It is a process because once you receive a diagnosis, the next step is starting a new challenge and chapter: treatments, therapies, medications, educational plan, and life.
A natural reaction is to look online for answers, but the internet is a double-edged sword. While it’s filled with knowledge, it can lead people down a rabbit hole that can feel formidable and tiresome. When researching online, seek out credible sources, such as the Mayo Clinic and associations linked to the disability (examples include the Autism Society, the National Organization on Disability, and the Tourette Association of America).
Local organizations such as Special Kids Connect (SKC) are valuable resources for Monterey residents. This nonprofit “supports individuals with disabilities throughout their lives, their families, and our community by connecting families, sharing resources, and offering recreational programs for children and young adults that promote social skill development and inclusion in community settings.” In 2022, a competitive grant award from the California Department of Developmental Services and the California Department of Education designated Special Kids Connect as Monterey County’s first Family Empowerment Center, allowing them to provide a variety of educational support, community programs, a resource directory, workshops, events, and more.
Their Mom’s Nights Out social events provide support for parents to share experiences and provide references and referrals and a sense of camaraderie. Many national associations have support groups as well, such as monthly Zoom calls, conferences, children and family camps, webinars, and resources. They often have resources to share with schools and educators, which can be especially helpful in IEP meetings and trainings.
“Challenging” is a tame word to describe navigating the American medical system, and obtaining a medical diagnosis for a disability can be a lengthy and costly process. Give yourself permission to seek second opinions and/or different providers if you are not comfortable with a doctor, therapist, etc. Trust your gut and find supportive staff who will be thorough and informative to your child and family. It can be frustrating feeling like you are starting over but will be worth it in the end to have medical providers whom you feel comfortable with. Local families are also amazing resources for referring doctors, therapists, and other programs and services.
As every child is different, so is each diagnosis. Disabilities are complex and manifest differently in everyone. Lean on medical professionals and service providers you trust, and when researching on your own, seek out credible sources and lean on other families for knowledge, guidance, and support.
Special Kids Connect and the Tourette Association of America have been invaluable resources for Sabrina Hiltunen and her family.