3 Hard-Fought Lessons I’ve Learned as a Special Needs Parent

I have been a mother for seven whole years and a caregiver to our little fireball for three years. Going into motherhood, I didn’t expect to have a child who would need me for the rest of his life.

Please let me explain.

I know we never truly stop being parents once they grow up and start a family of their own—I get that. What I didn’t expect was to have a child who would depend on me for everything we, as typical people, take for granted.

What I truly didn’t expect was the fear and uncertainty the future would hold for him—who will care for him when I leave this world?

I know a diagnosis doesn’t define our son, but he will always require someone to be there for him. 

Being a mother, a parent, to a special need’s child is definitely one of the hardest things I have ever gone through . . . and continue to go through on a daily basis.

While our lives are a constant rollercoaster and our future unknown, there are a few amazing lessons I learned from being a mother to a special needs child.

1. I learned about my strength.

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I am the most emotional person you will ever meet—just ask my husband. Any episode of Grey’s Anatomy will put me on edge and the waterworks will start.

He’s now got our oldest son trained to look at me after a super emotional movie or TV show, and he’ll exclaim to his daddy, “YES, she’s crying!” It’s quite funny.

All jokes aside, I didn’t realize how strong I was until I had to start advocating for our son Jaxson. I used to be someone who avoided conflict and didn’t like to voice my opinion.

When our son was just a few weeks old, a craniofacial doctor wanted to break his jaw, push it out, insert a trache, all to fix his recessed chin (or micrognathia). Needless to say, I said no and the doctor did not like that.

I didn’t want him to have to endure such a scary surgery at such a young age without figuring out why he couldn’t eat or gain weight. I’m all about doing life-saving surgeries but there had to be more than what was right in front of us.

My son Jaxson taught me to stick to my guns and fight for what I think is best for my children.

2. I learned to do my due diligence.

Due diligence and strength, honestly, go hand in hand. I’m a little bit of a scatter-brain—call it mom brain—but my memory hasn’t been the same since having kids.

As a military family, we move around every few years—it’s part of life. As soon as we moved to North Carolina, I changed our primary care doctors, scheduled new patient appointments, and got all of our referrals out.

Karen—yes, the referral lady and I are on a first-name basis—was honestly astonished by how quickly and efficiently I had everything set up.

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Within the month, we were traveling to Duke Specialty Care for continuity of care for Jaxson. When you’re a special needs parent, you understand how hard it can be to get in with specific specialty doctors.

You realize how important it is to get your child seen by his care team to ensure he continues to have the care he needs.

My son Jaxson has definitely taught my scatterbrained self the importance of doing my due diligence and following through.

3. I learned to give myself grace.

I saved this for last because it is the most important lesson I learned as a special needs parent. And honestly? I still battle with this almost daily.

I’m sure you can relate as well, being a parent to a special needs child is definitely the hardest thing you can do.

Being a parent, in general, is hard.

You are constantly worrying about things that are not in your control. For example, our son experienced his first seizure and first febrile seizure last year.

RELATED: Dear Special Needs Mom, I See You

Both times I kept putting myself down—I should’ve watched him, and I should’ve recorded the febrile seizure.

I should’ve done this, this, and this. Does this sound like you?

PLEASE STOP, we need to give ourselves a little grace. You are the most important person in your child’s life, and you are doing amazing each and every single day.

You’re doing what you can with what you are given.

And just know you are not alone in this journey. I am here rooting for you!

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Articles by Jennifer Carfora

Jennifer Carfora

Jennifer is a military spouse and mom to two rambunctious boys. Her youngest son is diagnosed with DYRK1A Syndrome, SPD, and ASD, and she loves sharing their story to help other families going through the same journey. You can find her on Failure to Thrive No More where she shares parenting and pregnancy tips and hacks.