This is the job you never thought you would have. You may not even know what advocate really means, but here you are. You, as the parent of a child with special needs, is his or her best advocate.
Merriam-webster.com had three definitions of advocate that all apply at some time in the parent’s journey.
- “one who pleads the cause of another.”
- “one who defends or maintains a cause or proposal”
- “one who supports or promotes the interests of a cause or group”
“But in a home where grief is fresh and patience has long worn thin, making it through another day is often heroic in itself.” Melanie Bennett, Learning to Dance in the Rain
As a pediatric physical therapist, I saw parents thrust into a world they knew nothing about. It was overwhelming and lonely as they tried to navigate the winding road between doctors, therapists, specialists, teachers, society, and their own emotions. They found strength they never knew they had and their resilience never ceased to amaze me.
Here are eleven suggestions that can make advocacy for your child easier and more efficient. Several are adapted from Robin McClure, verywell.com.
- “Learn all you can about your child’s special needs”– Knowledge is power and you need to know the facts. You want to understand the “language” when you are speaking with medical professionals, and it helps you to formulate questions.
- “Ask lots of questions and listen to answers”– Write questions down when you think of them so you will not forget. Doctor and therapist visits can be overwhelming, so it may be beneficial to take someone with you. What you don’t hear they might…four ears and better than two.
- Become an expert on the state and federal laws that apply to your child’s special needs – Again, knowledge is power and the best person to stand up for your child is YOU! There are laws that were put into place to protect and you need to know them in case others are not forthright.
- “Be a problem-solver not a problem”– Focus on identifying the problem and coming up with a solution. Conflict between you and medical professionals or educators will get you and your child nowhere, on the other hand, working using a team approach will get better benefits for your child. Avoid blaming and remember an open mind is your friend.
- Keep lines of communication open – No one can read your mind so speak up. Not everyone knows how to meet your child’s needs so educate them in a calm positive manner. You can be persistent while also being respectful.
- “Trust your instincts”– Simply put, trust your gut. If something does not seem right it probably is not. You have the right to respectfully question anything regarding your child. That is your job.
- “Think long term” – Your child may not grow up and leave home or live on their own. It is good to look at options early on and make a viable plan. Waiting until the last minute can be stressful and overwhelming. There should be transition teams to help you along the way.
- Keep your paperwork organize and keep copies of EVERYTHING – Write your questions and concerns down along with the answers. Keep a copy of all medical documents and records of correspondence such as emails and phone calls. Then, make sure it is organized so you can put your hands on any record quickly. Not only is this good to have to refer to, but this will also give you a sense of control.
- It is okay to make mistakes – Once you realize you have made a mistake, fix it the best that you can and then move on. There is no time to dwell on it. Use it as a learning experience.
- You are not alone – Connect with other families. Look for support groups, or ask your medical professionals to point you to helpful resources. There are other parents that do understand what you are going through like no one else.
- Self-care – It may seem counterproductive to take time for yourself when you are so busy dealing with your child, but it should be a priority. If you are not doing well then, your child will not do well. How can you take care of someone else when you are not your best? The answer is you can’t. Even if you start with just a few minutes a day there will be benefits for both you and your child.
“Once you learn to appreciate the small victories there is no need for a finish line.” Jessica
Being a parent is not easy and there is no manual. Being a parent of a child with special needs is even more difficult, not because of the child, but because of the many outside forces beyond your control. The best you can do is become your child’s number one advocate and protector. Do the best that you can do and that is all that can be asked.