Fort Worth, Texas,
08
June
2016
|
05:36 PM
America/Chicago

Avery's Journey: An autism spectrum diagnosis

A mom chronicles her daughter's time at Cook Children's

“Life is all about how you handle Plan B”

My mom gave me a ceramic plaque with this quote on it several years ago when I was going through a tough time. Over the years, it’s amazing how many times this quote has rung true. Plan B has meant … A divorce. Being laid off. A second marriage. Fertility treatments. A baby in the NICU. A baby at home on oxygen. A toddler who doesn’t yet speak or like to eat. And now, an autism spectrum diagnosis for Avery.

We’ve known for a while that Avery’s development is delayed. It hasn’t been any big surprise to anyone considering her early entry into this world and her 234 day NICU stay. We just kept saying “she’ll get there on her own time.” And she has made progress. HUGE progress. In a year, she’s gone from not even sitting up to sitting, crawling, walking, running and being off oxygen! She’s babbling more, making more eye contact and overall becoming more interactive.

But still, my mommy instincts have told me for a while that something else was going on. As much as I wanted to just call her development delayed, most of the time Avery is perfectly happy to exist in her own little world without the need to interact or connect with others. And we know that this is not “normal” when it comes to development.

After mentioning this to a doctor at our last NICU follow up clinic visit, we received a referral to the Child Study Center. And even though I had my own suspicions about an autism diagnosis, I wasn’t ready for a doctor to agree with me. And so I sat on the referral for three months. I kept making excuses. It was too early. Her behavior is just a product of the fact that she was in the NICU for so long. But it became clear to me after mentioning the referral to several of her therapists that others had concerns as well. I just kept hearing “It can’t hurt to go and see what they say.”

And so, I filled out the  application, mailed it in and got super lucky when the Child Study Center had a cancellation and got us in, all within a month of mailing the application in. Our appointment took almost three hours and at the end we walked out with an autism diagnosis and a recommendation for ABA therapy.

Avery’s diagnosis is different than a full-term child receiving an autism diagnosis. The doctor kept emphasizing that Avery’s primary diagnosis will always be prematurity. Because she was born so small and her brain had to develop outside the womb and had periods where it went with little to no oxygen, it developed differently and quite honestly, it has some damage. It pains me to type that. The good news is that Avery is young and she continues to progress.

So many things are running through my head as I try to process this new diagnosis. The one thing that keeps coming up is that I am so glad that God chose me to be Avery’s mom and I’m so grateful that I came to work at Cook Children’s, which has opened my eyes to all the resources that exist in our area. I’m grateful that Avery has given me the strength, passion and love to continue to fight for her and make sure she has the best life we’re able to give her.

We are still figuring out exactly what her diagnosis means and how it’s going to change things. I learned through our NICU experience that writing is a powerful coping mechanism for me. I’m not looking for attention, sympathy, etc., it’s truly just a way for me to document and work through my feelings.

Am I sad? Yes, absolutely. For once in her life, I just want Avery to catch a break. I just want her to live a “normal” childhood, whatever that means…But for the time being, that’s not our path, that’s not her destiny and that’s OK.

About the author

Kelly Wooley is a Marketing specialist at Cook Children’s. She is writing a series of blogs chronicling the birth of her daughter Avery and their time spent in the Neonatal Intensive Care Unit.

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