Whenever I reflect upon my journey of the mother of a child (now a young adult) with special needs, I am sometimes surprised, but always grateful, for the opportunities and learning experiences that "being Melanie's mother" has brought to my life.
I've learned that accessing support and services for kids with special needs is critical to their long-term success, and that parental advocacy goes beyond working with our children's schools. We must also address inclusion in our communities, ensuring our children's needs are being met by various service agencies.
So, where does a parent begin?
Information gathering. Depending on what your child's disability is, he may qualify for different types of services. For example, young children may qualify for Birth-to-3 services, a federally-mandated Early Intervention program. Children under age 22 may qualify for Children's Long-Term Support Home and Community-Based Medicaid Waivers (CLTS Waivers). These waivers provide funding to support children who are living at home or in the community who have substantial limitations in multiple daily activities due to developmental disabilities, severe emotional disturbances or physical disabilities.
Team building. Remember, you are not an island. Work to build positive and proactive relationships with the professionals, teachers and therapists who work with your child. Developing these connections can really help you learn about changes in education that are coming down the pike. You will also be able to share new ideas and innovative tools that can assist your child and others. Also, make sure you participate in a wide variety of activities in your child's school and within your community, rather than focusing only on events for children with special needs.
Securing backup. At times the evaluation process can be overwhelming. Don't be afraid to ask family members or friends to accompany you to appointments, meetings and events. They can serve as another set of ears to hep you digest and process information during a doctor's appointment or in an IEP evaluation.
Knowing your rights. If you feel your child's disability will impact her performance in school, you have the right to request a special education evaluation. Your child has the right to a free and appropriate public education (FAPE) under the Individuals with Disabilities Education Act (IDEA). If your child qualifies for an IEP, he may have the right to extra time on tests along with other accommodations or modifications. Keep informed about your school's legal obligations to provide your child with an evaluation and other services.
As a parent of a child with special needs, I have learned so much and have met such wonderful people, and my desire to help others has been strengthened by my career as a special education teacher and school administrator. Today, even though my child is 27, I remain her strongest supporter. As parents, our role is to help and guide our children, and that means taking the time to research, learn and advocate on their behalf so we may remove barriers to their success.
Nicola Ciurro is the early childhood education director at St. Francis Children's Center.