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.

Previous articles documenting Avery's Journey:

• Avery's story - part 1
• Avery's story - part 2
• Avery's story - part 3
• Avery's story - part 4
• Avery's story - part 5
• Avery's journey - part 6
• Avery's journey - part 7
• Avery's journey - part 8
• Avery's journey - part 9
• Avery's journey - part 10

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.

Don’t be confused though. Julia and her dog, Journey, have a big responsibility at Cook Children's. Yes, they are there to play, but their mission is always to give patients and their families a sense of normalcy during a stressful time. From visiting children in their hospital rooms to supporting them during procedures, child life specialists, like Julia, help patients cope with what they are experiencing while giving them a sense of control.

"My favorite part of the job is being able to help children overcome their anxiety. It's incredible to watch something that was really scary to a patient at first become no big deal," she said.

If you've ever been to Cook Children's Medical Center, you may have seen Julia or others in child life shooting Nerf guns in the hallways, painting with patients or taking a golden retriever for a walk. Their jobs are fun, but also very important. They help educate, prepare and support children through tests and procedures. They are specially trained to speak to each child on his or her learning comprehension level.

"When I was a freshman in college, I couldn't decide whether I wanted to become a nurse or a teacher," said Julia. "Then a family friend was hit head-on by a drunk driver."

That friend was 9 months pregnant. Both survived, but the baby had a stroke and required extensive time in the hospital. It was a child life specialist who was called in to help the baby's older sibling during the family's difficult time.

"Helping siblings feel included is a big part of what we do," said Julia. "After I learned about child life, everything fell into place. For me, it was the perfect combination of medicine and child development."

She went on to get a bachelor's degree and become a certified child life specialist, taking a position with Joe DiMaggio Children's Hospital in Hollywood, Florida. In 2009, Julia packed her bags and took off for Texas where she would soon find her calling.

"I wanted to have Journey with me because I've seen the difference these dogs make," she said. "We visit a lot of patients with serious illnesses and it helps them open up. For some reason, when they are petting a dog they will start talking about things that they haven't mentioned before."

Journey not only accompanies Julia during her 8 hour shift, she also lives with her.

"In the morning, I put her vest on and she knows it's time for work. But at the end of the day, she rests and plays just like a regular dog," she said.

There are four certified therapy dogs at Cook Children's and more than 50 staff members in the child life department. Their roles range from specialists like Julia to music therapists, artists, educators and even clowns. It's one of the largest child life departments in the country and a vital part of Cook Children's promise to improve the health of every child in our region, by giving patients and their siblings the opportunity to be who they are first and foremost, kids.