Helpful Tips to Being a Great Advocate for Your Child

What is an Advocate?

Webster’s dictionary defines an advocate as someone who “pleads the case of another”.  Children with special needs or ongoing medical issues present a unique situation that requires an advocate willing to work hard on their behalf.  As a parent, you should ask yourself, “Who is the most qualified to fight for my child?”  Who is going to work harder than you to make sure your child receives everything they need?  The answer, of course, is YOU.  You as the parent are more qualified than anyone else.  Being an advocate for our children is one of the most important hats we wear as parents.

However, fulfilling this role is not always easy.  The definition above doesn’t claim that advocates are perfect or always make the right decision for those we’re working for.  You WILL make mistakes.  Accepting this fact now will make you a more effective advocate for your child in the long run.  Don’t doubt yourself.  Don’t dwell on mistakes.  Look forward and know that because you have your child’s best interest at heart, you’re going to be successful.

Be prepared

It has often been said that success is when preparation meets preparedness.  You’re not going to be a successful advocate for your child by being lucky.  You have to be prepared.  Whether you are advocating for medical needs, financial assistance, or education services, you need to develop a purposeful plan to effectively advocate for your child. 

1.) Ask Questions.  What are you child’s needs?  What are your child’s goals?  What are you hoping to accomplish?  Answers rarely come unless questions are asked first.      

2.) On Paper.  On Purpose.  Simply thinking through things is not an effective means for developing a plan.  You have to write it down!  Create a list of what you want to accomplish.  As question arise, write them down so you can remember to find answers.  

3.) Organize.  Don’t Agonize.  Organization solves a lot of problems.  Be sure to file and keep good records of all medical, school, and other important documents.  Keep a list of all contacts, for example doctors, service providers, social workers, home health, and any support system you might have during your family’s journey.

Be professional

As humans, it is our natural tendency to react when obstacles get in our way.  It is so easy to become frustrated when various roadblocks prevent us from doing what we know is best for our children.  Many parents have allowed frustration to turn into anger and have allowed anger to fuel their actions.  Successful advocates realize that positive outcomes are the result of positive attitudes.  Pleading your case with professionalism, not anger, will always yield better results.

Become an expert

Part of being prepared, and being professional, is equipping yourself with knowledge.  Being your child’s advocate is no small task.  To be effective, you may need to learn medical terminology, disability laws, the special education system, and various other services provided by a number of agencies.  Expertise is not developed overnight, but you have to start somewhere.

1.) Find resources to educate yourself by any means necessary.  Take an all of the above approach to finding information.  The internet, books, medical journals and other people can all prove to be valuable resources.  Be cautious that the information you are using is from a reliable source.

2.) Study state, federal and education laws that affect your child.  Know your rights and responsibilities.  

3.) Contact agencies and service providers to learn what resources are available to you. 

4.) Ask questions and don’t settle until you find the answers.  Don’t be afraid to call after a doctor’s appointment to ask questions that you may not have thought of while in their office.  Seek out other sources if you don’t find the answers you’re looking for from you first option.

5.) Make connections with other parents that understand your journey.  These are individuals who have been where you are and are often the most willing to help.

When the sun rises.

I'm a firm believer in finding the bright side in every situation, or at least trying to. I don't think I'm alone when I say that there are times when we just get caught on the dark side for a moment or two before our eyes can focus on the light in the horizon. 

The day Congenital heart defects (CHDs) came into my life was a beautiful, fruitful day until it made its presence known. That moment was as if I were hit from behind, knocked out cold, and placed in a world without light. 

CHD robs from so much from us. 

It took all the first moments I had hoped for. The first bath. Kangaroo time. Diaper changes. Even my first glance at my newborn. 

Our story in a nutshell:

I had an ideal pregnancy with lots of "morning" sickness. Not sure why they call it morning sickness. All day sickness suits better in my opinion. I had my birth plan written down. I wanted everything to be as natural as possible. 

The 20 week ultrasound was all it was hyped up to be. You know, 10 toes, 10 fingers, oh and we're having a boy. Oh how naive we were. Around 30 weeks, we had one more ultrasound. This is where the dream crushing began. (Hold on just a little while longer on the dark side... the sun will rise soon!) Our little boy, Aiden, was frank breech. This meant he was head up and folded at the waist. His teeny toes were beside his head. It can be dangerous to try to turn a frank breech baby and they aren't likely to turn on their own. This was when my Dr told me that I would more than likely have a cesarean. 

Fast forward a few weeks, my water breaks. But I didn't know that. I think it happened early Tuesday morning. Remember when I said I was naive? I wasn't kidding. At exactly 34 weeks and 6 days, on a Thursday, my coworkers convinced me to see my Dr. An ultrasound and a few other exams later, she tells me that my fluid is indeed super low and that she can't deliver because he's 5 weeks early. She makes a call to a high risk doc at their sister hospital and then were on our way. 

There was lots of hustle and bustle. The main concern was if his lungs would be developed or not. At 35 weeks, the lungs finish their development. We were prepared (or as prepared as any expectant parent could suddenly be) for either a good lung or bad lung scenario. 

Friday afternoon, a little past 2 a blue baby was born. He didn't cry. He didn't get to feel his mom's touch. He didn't get to hear me say "I love you". He was whisked away and I was put out due to some minor complications. 

The rest is a blur but here is what I remember. 

I woke up in recovery. No baby. Sleep. I woke up again, in a room this time. No baby. Friends and family. No husband. 

I woke up again. No one but my husband present. He was sobbing while trying to tell me something in between the streaming tears. "He is sick. I don't know what to do. He's sick." He kept repeating this again and again. He wept a desperate prayer begging for our baby to be ok. 

The neonatal doc on that night wasn't optimistic. He couldn't help him anymore and so he was requesting a transfer to a hospital designed to help sick babies. He diagnosed Aiden (we named him Aiden by the way) with Persistent Pulmonary Hypertension of the Newborn... "but don't google that" he said. (We googled it the next day. Worst idea ever.) I had yet to see him and now I'm being told he may not even make it through the night. 

I asked to see my baby before he left. He was wheeled in the room with two transport nurses. He was strapped in a portable incubator with a breathing tube taped to his face, an IV in his head, an umbilical deep line, ear muffs, ekg wires, o2 sensor, and a tangle of wires. I asked if I could touch him for the first time. I feared it would be the only time. As the nurse opened the window for me to slip in my hand, she let me know that it must be gently and brief as he was super sensitive to every aspect of his surroundings. 

This is our first family photo. 

I hate it actually. I love it too. I've never shared this photo with anyone who wasn't present when it was taken. It's so raw and exposes so much. Every time I look at it, which isn't often, I feel like I'm right back in that moment. Terrified and experiencing symptoms of utter disbelief.

3 days later, it was recognized that Aiden had been misdiagnosed. Once his series of heart defects were detected, treatment was adjusted and he began a whole new journey. I remember the first moment we sat with the cardiologist. You might be surprised that we were actually semi-relieved to learn about his heart defects. There was more hope in this diagnosis that the previous one. 

They say hindsight is always 20/20. It's true in our case. The blessings revealed to us as we looked back on our journey were overwhelming. 

This is when the sun rises. 

Had Aiden been head down, he might had not survived delivery. Had he come on time, he might not have survived waiting for transport. He would have been born an hour away from the hospital he needed. 

This is our first family photo. 

It most certainly isn't ideal. 

I'm blessed because too many families don't get the chance to take a photo like this.  

I'm blessed because my warrior is alive. 

I'm blessed to be apart of a community that accepted me when I didn't want in. 

I'm blessed to know some of this worlds most courageous families.

There are countless blessings the sun has revealed throughout our journey. Some were obvious in the dark times, others required a search and rescue team. CHD robbed so much from us. I wouldn't change that. I know I'm not alone when I say this. Don't get me wrong, I wish Aiden didn't have to experience the things he did. There really aren't words to justifying why we wouldn't change it if we could. It's allowed experiences and blessings that have come to define parts of us. It's allowed my miracle child to be a living witness. There's something tenderly beautiful about being broken. 

One final thing. 

You may see us heart families go crazy about CHD awareness. It's not because we want to scare you. It's because we want to prepare you. Don't be blinded like I was. Don't be terrified that you will be the one (CHD occurs 1 in every 100 births making it the number 1 birth defect). Just be aware. Early detection allows for preparation which allows for a better chance of gaining a better outcome. I wasn't aware that a new human being could be born with such a thing like Heart defects until the moment our little one was diagnosed. Don't be like me. Just know.

Tara Gilliam is on the board of directors for Kerrington's Heart Inc. She is one of the founding members of our Kentucky based heart mom community. She is mom to Aiden and Aria.