Kayla and Josh started realizing that their son Parker was falling behind in his development. At 12-months old, he was barely learning how to army crawl. They went to a geneticist, and through genetic testing, Parker was diagnosed with ADNP syndrome– a genetic mutation which can include developmental delays, autism, and distinct facial features. Josh and Kayla were extremely fortunate to get a diagnosis as quickly as they did. Once Parker had a diagnosis, a game plan could be made.
Parents’ Initial Thoughts After Getting ADNP Syndrome Diagnosis
At the time, Parker was the 85th person to have been diagnosed with ADNP syndrome in the world. “It was really overwhelming,” Kayla said. For a few nights, Kayla had trouble sleeping because she was constantly thinking about ADNP. She quickly contacted the ADNP Kids Foundation and found fellow parents and a support group for guidance and comfort.
While Josh and Kayla waited for a diagnosis, Josh took that time to prepare himself mentally for the results that would come back. “I had already made up my mind,” Josh said, “If Parker’s got something, we are just going to ride this out.” After receiving an ADNP syndrome diagnosis, he was ready to find resources, start therapy, and move on.
Hardest Part is Changing Your Expectations
“The chances of him living independently as an adult are very slim,” Kayla said. Having to come to terms with that was challenging at first for this young couple. They had to change their expectations of what they thought his life, and their lives would look like. On the other hand, Kayla has also found that Parker is such a joy to be around that she doesn’t ever want him to leave.
The communication barrier has also been challenging. At 3 1/2 years old, Parker just started saying his first word. It has been exciting to hear his voice and they look forward to future progress.
When Parker was born, Josh was excited to have his first child be a son. “When you have a boy, you have an idea of what you’re expecting your life with your son to be,” Josh said. He imagined taking him to baseball games, throwing a football around, playing other sports, etc. “That kind of just goes out the window,” he said. Compared to other children, there are things that Parker won’t be able to do with Josh. But, Josh recognizes Parker does things other kids don’t do that makes him such a blessing.
Children with ADNP Syndrome Make EVERYONE Happy
“He’s got this inner peace and joy that is just contagious,” Josh said. Parker will go up to strangers and give them the biggest hug just because he wants to. Like other children with ADNP syndrome, he gravitates towards adults and never hesitates to show his love for them.
“I feel like he’s changing all of us for the better,” Kayla said. She has seen Parker interact with other people and knows they are impacted by him. He easily brings out the best in others and everyone could learn something from him. When Kayla has a tough day, Josh tells her to forget about everything and just go play with Parker. It cheers her up every time.
Josh and Kayla’s friends recognize the challenges they face but they also see the joy they experience. It has helped them learn to not pity someone who is different but to accept them instead. When kids are around another child with a disability, it is a great opportunity for them to learn to be accepting as well.
“I Would Never Change Anything About Him”
“Enjoy it, it is a blessing,” Josh said. It won’t seem like a blessing in the beginning when you receive the diagnosis. You will feel worried or even sad but there is so much joy ahead of you. Many parents who have a child with ADNP syndrome say they wouldn’t change a thing about their child. It may sound cliche but it is true.
Kayla finds connecting with fellow parents of children with ADNP to be very helpful. “They want to help you and they want to guide you,” she said. Having some “understanding friends” to talk to when you are having a tough day is priceless.
“Our lives are so much better because of Parker,” said Kayla. Josh and Kayla cannot reiterate that enough. They have had their challenges but the joys outweigh them every day.