Whenever I reflect on my journey as the mother of a child (now a young adult) with special needs, I am sometime surprised, but always grateful for the opportunities and learning experiences that “being Melanie’s mother” has brought to my life.

The journey of parenthood constantly presents us with new challenges and adventures. However, for those of us raising children with special needs, this can sometimes feel overwhelming. Accessing support and services for our kids is critical to their long-term success, and parent 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?


Discovering more information about your child’s disability, whether from organizations and other resources, or more importantly, from other parents, will help guide you through this process.

For example, young children may qualify for Birth to Three services, a federally-mandated Early Intervention program to support families of children with developmental delays or disabilities under the age of three.

If your child is under age 22, he or she may qualify for special education services and Children’s Long-Term Support Home and Community-Based Medicaid Waivers (CLTS Waivers). These waiver services are funded in part by the federal government and in part by the state or the county. They provide Medicaid funding to support children who are living at home or in the community and who have substantial limitations in multiple daily activities due to developmental disabilities, severe emotional disturbances or physical disabilities.

Throughout the evaluation process and as you determine what services your child may need, you will likely learn a new language full of acronyms and abbreviations. Make sure you ask lots of questions and never hesitate to seek clarification.

Build a team

Remember, you are not an island. So, whenever you can, 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 not only your child, but others as well. Also, make sure you participate in a wide variety of activities in your child’s school and within your community, instead of focusing only on events specifically for children with special needs.

Bring Your 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 don’t have to participate, but rather they can serve as another set of ears to help you digest and process information during a doctor’s appointment or in an IEP (Individualized Education Program) evaluation.

Know Your Rights

If you feel that your child’s disability will impact their performance in school, you have the right to request a special education evaluation. Make sure you understand that your child has the right to free and appropriate public education (FAPE) under the Individuals with Disabilities Education Act (IDEA). If your child qualifies for an IEP, he or she 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 an evaluation and other services. It is crucial that you understand the laws regarding your child’s well-being.

While this process will take time and require additional effort, in the end, it is worth every moment. As a parent, 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 now 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.

By Nicola Ciurro

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