Part II

Advocating for your family member, either within the school system or the healthcare system, is a touchy topic. This seems to be a subject that bears discussion since most of our feedback was overwhelmingly positive. Obviously we hit a nerve since many people have approached us over the past few weeks to discuss our previous article. This is a great time for us to discuss the goal behind this forum. Our goal was to create a platform where we can elaborate on ideas, concerns and questions that arise on a regular basis in our, and others’, practices. Many of our topics are important, but not inherently complicated nor controversial. Not so with this one. Let’s just be clear: We are not looking to determine your best course of action. Each person’s situation is so personal and complex that we would be foolish to have a blanket rule for everyone.

While, for many, the idea of advocating for their loved one would seem obvious, this topic is complicated. Some of the questions that we have been asked to address include: What happens if I disagree with a specialist’s diagnosis or treatment plan? How do I decide how many opinions to pursue? I think my doctor/teacher/therapist is overreacting; how do I decline their services or recommendations? At what point am I being irresponsible? What if their recommendation/treatment plan is accurate and I just don’t want to hear it? What if they are overreacting and I am putting my child through time-consuming, expensive evaluations for nothing? I have met with many different specialists and have several different diagnoses…now what? And last: How do I decide that I have done my best to meet with as many different specialists as possible and it is now time for me to move on?

Obviously, these questions run the gamut. As we said, it is a complicated subject. Our goal is to begin a dialogue and get you thinking. It is to bolster you and fortify you to collect enough information to make informed decisions for your family. We have worked with families of children with severe developmental delays who aggressively pursued medical and therapy specialists until they finally found the proper diagnoses and medical/treatment plans for their children. We have worked with families who have asked us to be the one specialist, outside of their pediatrician, in the hopes of helping their child catch up to his or her peers. We have worked with families who have asked us to intervene on their children’s behalf and be an active participant in the medical and academic components of their children’s lives. Because of the love you have for your child, you the parents become the coordinator of your child’s care. You become their mouthpiece. You become their advocate.

So, you want to become an advocate for your child. Your next question would be, “How, where do I begin?” Well, the best place to start is to make a list of all of the areas of concern. Do you have concerns about medication? About overall development? About academics? About attention? What about social/emotional development? Sleeping, eating, hearing? The best place to begin is to determine what all of your concerns are and make a detailed list to present to your pediatrician, teachers or other specialists. One important idea to help guide you is to take notes at your appointments. This will help you keep track of recommendations.

Once you have those recommendations, carryover and follow-through are important components. This means that in order for things to move along, the parents will have to be on top of appointments, recommendations and carryover at home. Additionally, as part of your advocacy, it is best to make sure that all members of your healthcare or educational team are communicating with one another and carrying out all of those recommendations that they put in place, as well.

In our next article we will address some of the other advocacy and diagnosis questions listed above.

Alyssa and Aviva are sisters, occupational therapists and owners at Kids’ Therapy Place, LLC. They happily accept questions and comments at [email protected]. Look them up at www.kidstplace.com.

By Alyssa Colton MA, OTR,
and Aviva Lipner MA., OTR