What to Do If Your Child Receives a Diagnosis.
Developed by Jackie Yearby and Emily DeWoody for the Interagency Council of Brevard
You get the feeling that something isn’t right? Go with your gut, find a doctor or specialist and get a diagnosis, and assemble your medical team. Find a support group to understand and deal with the diagnosis.
This can be a scary time but stay positive and know that you’re not alone. Don’t be afraid to ask lots of questions, or to seek a second opinion if you’re not sure. Be ready to accept the diagnosis that you’re given. Acceptance does not mean giving up, it just allows you to become the best advocate that you can be. Start collecting your documentation…this is a life-long process. You will need documentation to gain access to services, applying for APD, legal purposes (guardianship), etc.
Find a support group to learn about the diagnosis. Building friendships with common interests is important for both parents and children.
Find community resources. Become familiar with local organizations and agencies that provide services to individuals with disabilities. Develop extra-curricular activities that can be maintained throughout the individual’s life such as bowling, dance, robotics, horse-back riding, or Special Olympics.
In order to receive services you may need to get an intellectual evaluation, in addition to whatever medical diagnosis was provided. Contact Early Steps if your child is under 3 years of age. Contact FDRLS (Florida diagnostic and Learning Resources System) if your child is between 3 and 5 years old. Contact your school guidance counselor if your child is older. You also have the option of seeking a private provider for an evaluation.
Apply for the Med-Waiver Wait List through the Agency for Persons with Disabilities (APD at apdcares.org) if your child has one of the following disabilities: Autism, Cerebral Palsy, Prader-Willi Syndrome, Spina Bifida, Down Syndrome, intellectual disability. For eligibility details visit www.bit.ly/APDeligibility
Research school options including traditional education versus alternative schools or home schooling. If your child is in school, and not yet receiving services, contact your guidance counselor to begin the evaluation and eligibility process. If your child is found eligible for educational services, develop a 504 or IEP (Individual Education Plan).
Need help with the process? Contact the Family Liaison project for support: www.familyliaisonproject.org.
Be your child’s advocate. Put together documentation that explains his or her special needs. Create an “about me” page with your child’s strengths and difficulties to share with teachers and therapists.
It can be overwhelming and scary but take each challenge one step at a time. Connecting with local support and other parents can be a tremendous help.