What the Doctors Didn't Tell My Parents the Day They Got My Diagnosis


Dear parents of children diagnosed with special needs: please don’t give up.

On the day of my diagnosis, there was so much they didn’t tell my parents and me. They told us everything I likely wouldn’t do. They evaluated and pointed out my struggles and challenges. Appointment after appointment, my parents heard and had to be part of conversations about what I couldn’t do and what I likely may never be able to do. Professional after professional, year after year, diagnosis after diagnosis, appointment after appointment, meeting after meeting, time and time again this repeated itself.

You see, I wasn’t diagnosed with autism as a young toddler or preschooler. Seventeen years ago, when I was 4 years old, autism wasn’t as well-known and definitely wasn’t a likely diagnosis for a little girl who talked early. When the pediatrician asked my mom if I could say a three-word sentence at age 2, I told the doctor myself: “I do that!” This was the same little girl who didn’t know how to play with other kids or toys at preschool. This was the same little girl who frequently bumped into things, the same little girl who appeared to have very little knowledge of where her body was in space, etc. I was born six and a half weeks early, 22 years ago. Doctors didn’t know then what they know now.

My mom knew something wasn’t right and she trusted her mommy gut instinct on this one. I was her first child, but she just knew there was something different about me. When I was 3 years old, we found out I was vision impaired. My parents were told I’d likely be blind by age 5 or 6. Yet, something miraculous and unexplainable happened over the years–my sight started  to get better! The eye doctor, a pediatric ophthalmologist who works at a vision center would say to us, “I really wish there were more kids like Chloe so I could do a research study!” My fifth birthday came, then my sixth and seventh and not only could I see, but I was learning to read.

I qualified for special education services through our local school district when I was around age 5. My needs were being met, I received OT and speech, special education services, a teacher for the visually impaired services, PT and more. We also continued to see a neurologist as well because there was more going on than just vision impairment. My mom continues to hear things like, “It’s possible she had a pre-natal stroke.” Then we heard developmental apraxia as our answer, followed by ADHD, followed by a sensory processing disorder and finally followed by the one that matched the best: autism.

The one thing my parents were never told was that I’d be an intelligent, bright, smart, funny, kind, caring, helpful, loving and sweet little girl who would grow up to be a young lady and use her past experiences as a way to help others.

If there was one thing I could tell parents of kids who were just diagnosed it’d be: “Don’t give up, please don’t give up, and remember, no one can predict what the future will bring. Sometimes you just have to wait and see and ride the waves of life to get there.”

MIGHTY1

The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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