By Dr. Dana Harris

Navigating the waters of advocacy for children with special needs can sometimes seem like a typhoon with no way out. The key to remaining effective is to maintain a strong relationship with your child, understand how to approach the teacher or school administration, and recognize when to intervene on your child’s behalf. As a retired school principal with the Richmond County Public Schools, I can remember serving on the countless school-based educational planning committees, acting not only as the chairperson but as a devoted advocate for children. Our team would meet for hours, sometimes for an entire school day, documenting and listening to each family’s stories to gain a deeper understanding of each situation, which I may add, were quite compelling.  Every family’s story was different, so were the family’s unique circumstances.

Research has shown that parent engagement and successful parent-teacher partnerships result in improved educational outcomes for students, and this is especially important for students with learning disabilities. Families are critical partners in education. At a time when schools are scrambling to deliver regular education in a novel and new context, parents and educators must work together to select and design appropriate programs for students with special needs. The hallmark of effective home-school collaboration includes open communication and involvement in all stages of the learning process. Parenting a child with special needs is demanding. It requires extra effort in time, awareness and education. Recommended below are a few tips and suggestions aimed to help parents cope better with the challenges they face every day.

Emotional support is crucial.  Discovering that your child has special needs can be shocking and difficult. Coping with all the responsibilities can be exhausting and overwhelming. Surround yourself with people who provide the positive energy you need. There is power in numbers. To strengthen your ability to be an advocate for your child, find and connect with other parents who are also advocates. Meet as a group to discuss and learn from one another. There are many websites and forums that are quite helpful for parents of kids with disabilities. Most well-meaning parents of typically developing children may not be able to provide the kind of support you need, or they may find the conversation awkward because they are unable to offer practical help. It is always helpful to meet others who have similar perspectives or life circumstances. By building a network you will find a greater support system as a parent.

Take an active role in the school’s Individual Education Plan, also referred to as ‘IEP’. You are your child’s first teacher and most important role model.  You are also responsible for your child’s welfare and best interests. You are the expert when it comes to your child and, with the right information, you will play an active role in planning your child’s future. Parent participation in the special education decision-making process is vitally important. The most important thing parents can do is ensure they are involved with and take an active role as a member of the Individual Education Plan (IEP), and the team that determines your child’s educational path. Know your rights and become familiar with the process to effectively advocate for your child. This increases accountability. Remember that this is your child’s future for which you are advocating. Keep good records. They are essential to effective advocacy!

Build a relationship with your child’s doctor. Understanding more about your child’s disabilities and the available resources will help you a great deal. A doctor who is patient, comfortable to talk with, and willing to take a few extra minutes to help you understand your child’s medical needs is a plus. Give yourself permission to ask questions, get multiple opinions and ask your doctor about the research. Take it a step further and conduct research on your child’s condition by reading journals. Go beyond your comfort zone and ask for what your child needs. Look for websites on the internet that provide parent information. Take notes and check with your doctor to see if you understand it correctly. The more knowledgeable you become, the more comfortable you will be in addressing relevant concerns.

Take care of yourself.  This may be one of the hardest things you will ever do because you feel like your child should be the priority.  Do it not for yourself, but for your child.  Maintaining a healthy mind and spirit is a prerequisite to effective parenting. Your mental health influences how you think, feel and behave in daily life.  It also affects your ability to cope with stress, overcome challenges, build relationships and recover from life’s setbacks and hardships. While being a parent of a child with special needs is part of your identity, it is not all your identity.  It is extremely easy to allow an all-encompassing challenge like raising a child with a disability to define you. Find time for personal peace and solitude. Connect with others who can relate to your journey. Accept help from friends and family. Putting time toward your well-being now is making an valuable investment in your child’s future.

Celebrate the little things. Celebrate those accomplishments that seem small to others but are huge for your child. Kids develop differently. Some skills they may grasp, and others they may never master. The first step on their own, a word, a sentence, a hug—whatever the milestone—share it with those who love you and your child. The small things are often huge parts of a parent’s world.

Parenthood will undoubtedly bring a mix of emotions, experiences and frustrations, as does life, in general.  You can take comfort in the fact that you are not alone. Many other parents are on a similar path. As a grandparent who advocates for special education for my grandson, I can tell you that there is nothing on earth that is more rewarding. Find your voice and stand your ground as your child’s best advocate.

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