The average person seems to think there’s something special about special needs parents.
I’m constantly hearing, “I just don’t know how you do it!” or “You’re so strong!”
I just chuckle to myself because…
#1 I do it because my kids need me to do it.
#2 I only seem strong because I’ve been broken and put back together so often that I’ve built up some tenacity.
Thank you to Dell Children’s Medical Center for sponsoring this post. I am so grateful for the care you have given my children.
The truth is, special needs parents are NOT superheroes, we’re just parents that will go to incredible lengths to care for our children, just like everyone else.
You see, I never expected to be a special needs parent. Like many, the diagnosis blindsided us.
I didn’t know how to handle myself in this new medical world.
But I’ve learned a thing or four in the last couple years…
Four Truths to Help You Advocate for Your Special Needs Child
You are the Authority
You know your child better than anyone. It’s true! You’ve studied their every move since they were in your womb! Do not be intimidated by the complexity of your child’s diagnosis or the credentials behind a doctor’s name.
The medical professionals’ job is to educate YOU and empower YOU to make informed decisions.
If their explanation doesn’t make sense to you, keep asking until it does. You should not be in the dark about the underlying health issues of your child.
You Need to Know How to Use People
I’m an introverted people-pleaser. I don’t like to rock the boat or cause a fuss. But when your child’s health is at stake, you’ll have to rely on your inner mama bear to get stuff done!
You have to know when to use kindness to get staff members sympathy. Yet there are times that call for forcefulness. Honestly, sometimes you’ll have to be downright annoying before you’re given the attention and service you need.
As a special needs parent, you have to be adept and knowing when to build bridges and which ones are worth burning for the sake of your child’s needs. As much as we’d all like to make friends everywhere we go, special needs parents don’t have that luxury.
You Won’t Always have All the Answers
Being a special needs parent can bring on decision fatigue. And most choices are far from black and white.
That’s why it’s so important to be educated and empowered. But even with a lot of information, you’ll likely still be left with questions and tough decisions that even the experts don’t agree on.
At some point, you’re going to have to make the decision with the information you have.
When we had to make a 50/50 choice if our son should have brain surgery the very next day we relied on three things.
- Our doctors’ reputable experience and in-depth knowledge.
- Close family that we could use as a sounding board as we worked through logical scenarios.
- Prayer to an all-knowing and ever-loving God.
You Deserve a Doctor’s Respect
Not all doctors are created equal.
Some are too prideful, some have no people skills, some will show you the compassion you desperately need and some will fight right alongside you as you battle the terrors of disease.
You and your child need a doctor you can trust with their very lives. Find a doctor who respects that motherly intuition. They’re a fool if they don’t.
Find a doctor who genuinely cares and goes the extra mile. Find the doctor who respects your intelligence and empowers you with more knowledge.
We have found many doctors who far excel that description.
But sometimes there’s that one doctor that you subconsciously think is an angel in a white lab coat.
Dr. Moise Levy at Dell’s Children’s in Austin, TX is that man for our family. I will never forget our first meeting. Instead of launching into a medical lesson or a quaint summary from a Google search, Dr. Levy looked me in the eyes and said, “Tell me what you know about your son’s birthmark.”
I felt respected from the start. I was the authority over my child and he was there to empower and assist me. The gentleness he showed when he broke scary news to me was like a balm on my motherly worries.
Every procedure he’s ever performed on our son has gone exceedingly well and he always follows up with a personal phone call that night.
But it didn’t stop there.
Dr. Levy and his staff bent over backwards to coordinate not just my youngest son’s care, but eventually all three of my boys AND my husband! (We’ve got a CRAZY medical story if you’re interested!)
Every time I called his office, I spoke to a human, the SAME human, who knew me by name and went to bat with me against slow moving medical bureaucracy and ridiculously greedy health insurance schemes. They cared and they advocated for us!
I don’t know if you’ll ever read this Dr. Levy, but thank you. You were a ray of hope in a crushing darkness and I will always praise the Lord for bringing you into our lives.
For those of you who live in Central Texas, Dell Children’s specialty care is outstanding. Everyone has been friendly, kind and skilled.
Dell Children’s and Ascension has a wonderful resource for helping you find the right doctor for your child’s needs: FIND A DOCTOR HERE . (You may want to bookmark that for future reference).
They have also recently introduced their Texas Center for Pediatric and Congenital Heart Disease which offers comprehensive surgical care for the treatment of pediatric heart diseases and defects with a focus on patient-centered outcomes.
We have had many wonderful doctors that will forever be in our hearts.
I will always owe my gratitude to Dr. Clarke who first believed my son was misdiagnosed, Dr. Kane who found a way to side step our insurance’s red tape and get our other boys the brain MRIs that revealed the lesions, Dr. George for being will to explain neuroscience to this mama, Dr. Sid and his attention to detail and holistic care for our boys lives, and of course the unrivaled Dr. Smith who cut into my son’s skull and saved his life. You helped us make the hardest decision of your life and treated our son as your own.