One Hays family today is enjoying the best Christmas gift they could have received: a voice for their daughter.
Natalie McCullough is an energetic 9-year-old who loves to give hugs and play with toys.
“She’s a lover. She wants to make sure that everybody feels included and welcomed,” her mother, Karen McCullough, said.
But Natalie can’t always make clear what she wants or what she’s thinking.
Natalie was diagnosed at birth with trisomy 4p. Like Down Syndrome, it is a duplication of a chromosome — in this case, the short arm of chromosome 4.
How many individuals are affected by trisomy 4p is hard to pin down. The National Organization for Rare Disorders reports more than 60 cases in medical literature, while Unique, an international support group for rare chromosome and gene disorders, reported 85 cases as of 2004.
While there are common characteristics of those with trisomy 4p — such as developmental delays, speech delays or absence, craniofacial abnormalities — each case is also different.
Natalie sees doctors in Hays and at Children’s Mercy Hospital Kansas in Kansas City.
“When we found out about her trisomy at birth, Children’s Mercy couldn’t really give us any details of what life might look like for Natalie,” Karen said.
Karen and her husband, Jason, have found additional help through a trisomy 4p Facebook group of about 100 families.
“All the kids are so different. Natalie’s had more health concerns than most of the kids, probably,” Karen said.
“She had a tracheostomy for about three years and not too many of the other 4p kids have had a tracheostomy. She’s had cranioplasty surgery a couple of times. That was to rebuild her forehead,” Karen said.
Karen and Jason both work at Fort Hays State University. She is director of career services, and Jason is head track and cross country coach. They also have a son, Elijah, a seventh-grader at Hays Middle School.
“Fort Hays has been a big part of our journey with Natalie,” Karen said. “Everyone at Fort Hays has been so kind and generous about us needing to take off for life flights to Kansas City. I tell people if Jason and I had worked anywhere else, we might not have had jobs,” she said, her voice cracking with emotion.
Their families have offered much support, as well, Karen said. Jason’s parents moved to Hays from Atchison to help with Natalie, and Karen’s mother comes to Hays from WaKeeney almost every weekend.
Natalie’s health concerns have diminished over the years, however, she said.
“Natalie’s had quite a little journey, but she’s always been very loving and outgoing and very determined, so I just always tell people she’s writing her own story,” Karen said.
But making that story known has been difficult for Natalie, as she is non-verbal. She has been able to learn some sign language, but communication has mostly been rudimentary, Karen said.
“She’s really good at pulling you where she wants to go or moving your face towards the window if she wants you to look out at the window, or just going and opening up the refrigerator if she wanted a drink, or running out the front door if that’s where she wanted to go,” she said.
Speech language pathologist Andrea Wichers and special education teacher Lindy McDaniel began working with Natalie in pre-school and are her teachers today in Roosevelt Elementary School’s Strategic Teaching with Adaptations and Reinforcement program.
“In pre-school it was hard to even get Natalie to focus to attempt to communicate with picture symbols,” Wichers said.
But the educators found ways to help Natalie, who was eager to learn. She started using two buttons, one labeled “more” and another labeled “all done.”
“She would push those to communicate, and then we added ‘help,’ and since then we’ve just tried to figure out what meets her needs best so she can communicate, because she is extremely social,” McDaniel said.
“She’s matching colors and she’s able to identify objects and things like that. This gives her the ability to socially interact and be part of the classroom and family life,” she said.
McDaniel and Wichers have been trained in Language Acquisition with Motor Plan and its system, LAMP Words for Life. It uses a grid of core words and associated icons to help non-verbal students communicate.
The grids are consistent in the images and their placement. Posters are placed throughout the school, the office staff has copies and staff even wear aprons with the grid so STAR students who use the system always have access.
The consistency of the placement of the icons is a key, McDaniel said.
“With the consistent motor plan, kids can be automatic in their usage, so it’s like learning how to play the piano. I can play the piano and look at your or talk to you,” she said.
“We want those kiddos to be able to socially engage with their communicative partner, and they can do that because they don’t take so much effort flipping through pages and finding where words are so the message doesn’t get lost,” she said.
This spring, Wichers was able to put a trial version of a Words for Life app with voice output on a school iPad and tried it with Natalie.
“It’s not for every child. Some children actually do better with the paper version or manual communication,” Wichers said.
Within a couple weeks, they could see it made a difference for Natalie.
“When there’s no voice output, she could touch ‘go’ and not even know she missed the word ‘get,’ because there was no voice output to tell her she got the word wrong,” McDaniel said.
“She knows ‘Oh, wait I didn’t mean to do that.’ You can see that in her,” Wichers said.
But the iPad — part of the district’s one-to-one device initiative — was one that had to stay at school. At home, Natalie still had to rely on low-tech communication.
A friend of the McCulloughs at Celebration Community Church, Jessica Johnson, heard about Natalie’s use of the iPad. Also a member of Dialogue Ministries, Johnson reached out to the community to help get an iPad Natalie could take home.
A single donor — a retired educator — stepped up. While the McCulloughs received a card with his name, he wished to remain anonymous, said Kelly Schmidt with Dialogue Ministries. The iPad was given to the McCulloughs earlier this month. It has a sturdy case and a carrying strap, so Natalie’s parents or grandparents can carry it but she can still access it.
“It was very emotional. It felt so good to see the genuine reaction of surprise and thankfulness from the family,” Schmidt said.
The gift came just a couple weeks after Natalie received the 2018 Kansas Infinitec Outstanding Student Technology Award in Wichita.
“I was so excited for her, but I also felt a little sad that we weren’t able to use the technology at home with Natalie,” Karen said of the awards ceremony. “It was an answered prayer that Natalie can bring this tech home and we can utilize it in her home setting and the community.”
Before, they often had to guess what she wanted, which caused frustration for both Natalie and her family.
Karen said one evening after getting the iPad, Natalie got fussy. Her grandmother had just given her a drink, so they didn’t know what might be causing her frustration.
“We get out her iPad and Natalie pressed ‘drink.’ Sure enough, she was wanting more. She pressed ‘drink’ three times and she drank a cup of juice each time.
“We didn’t realize she was really thirsty. In our mind she’d just taken a drink and took that off the list,” Karen said.
McDaniel and Wichers said they have noticed a difference at school, too, since Natalie began using the iPad.
“We don’t have as many frustration outbursts, where she would kind of scream or just grab to try to get our attention,” Wichers said.
Karen said one thing she’s learned from her daughter is that those with the ability to communicate often take it for granted. It makes her all the more thankful for the donation of the iPad and those who made it possible.
“They’ve really given Natalie the opportunity to have a voice when she’s at home and when she’s out in the community with us, and allowed her to share her thoughts and her hopes and her dreams with all of us,” she said.
“Now we can really have the little details about Natalie.”