When parents have a child with special needs, they grapple with all sorts of emotions. At the same time, they have to learn to decode all the foreign language that comes along with it. If you are one of those parents, you might also worry that your child isn’t getting everything he/she needs. Know that your experience can be influenced by how you present yourself and your child’s needs, because information is power!
Parents need to start with the facts about their child’s special needs, while trying to keep their emotions out of it. Be current with fact-based knowledge from doctors, specialists, special education experts, attorneys, and teachers. C.A.R.E. for Special Children can help with deciphering, obtaining and understanding this information.
Ask a lot of questions like “who, what, where, when, and why.” Listen carefully to the answers you receive. Document the responses instead of relying on your memory. Learn how to best ask questions so they don’t come across antagonistic or defensive. It’s the best way to get open and honest replies.
I know that approaching school teachers, administrators, doctors, lawyers, etc. can be nerve-wracking and downright intimidating, but you know your child best, you spend more time with him than anyone, you are the expert, which is why you are your child’s best advocate. A parent’s perspective is invaluable and something only you can bring to the table. No one knows what is best for your child like you, so trust your instincts when something feels off and don’t be intimidated. Fake your confidence if you must, find a source of strength to be that confident parent when talking to a professional. If you think your child needs more therapy, then ask for it. Call an I.E.P. (individual education plan) meeting and express your concern.
Under the law, and practically speaking, parents have the most power to influence their child’s school program, medical protocol, etc. Knowing your rights is one way to find the confidence you need. Be seen, it’s very important that you are seen in all the circles where your child is being serviced or cared for. Let the doctors see and hear you, let the teachers and school administrators see you at meetings and school events and hear from you via email. Make friends with the doctors and their office staff, with the professionals, and teachers.
Smile when you see them and take the time to get to know them. Develop a connection, because remaining a presence tells them that you care about their efforts to help your child. Set emotions aside, (it’s not easy of course) and approach your meetings with schools or doctors, like a business negotiation. Keep a professional tone. Adopt an approach of cooperative problem solving. Working with your child’s teachers, therapists, or doctors, typically equals better results.
Propose solutions or help create a plan that works best for everyone involved. Be open-minded and hear proposed solutions from the other side as well. While in the hospital, if you think you need to get all your doctors on the same page, ask for a team meeting. The worst outcome— you won’t get what you want. Even if that occurs, you’ve demonstrated that you’re an engaged and thoughtful parent, committed to your child’s best interest.
Bring backup, ask family members, friends, or your local community advocate to accompany you to these appointments, meetings, or events. The importance of their input may surprise you. It always helps to have a second pair of ears, and another perspective. It also shows that you have support and a community advocate behind you.
Also, know your limitations. Advocating for your child with special needs can be very demanding, so it is important to know your strengths and weaknesses. It is especially important to pay attention to those weaker areas and find others who can assist you where you need it.
Time and time again, we see that when children are in the right environment in school, or getting the right care in the hospital, with the right doctors they thrive—and that is our goal. So, be a force for your child—a kind, thoughtful, and polite force—but a force, nonetheless, to be reckoned with.θ
