It was supposed to be a fun family trip to a theme park in Kansas City. In fact, the park’s name is “Worlds of Fun”. But for Jeremy and Amelia it was anything but. Elizabeth, Jeremy and Amelia’s two-year-old daughter, threw tantrums while at the park – screaming and pulling her hair. “It was miserable,” said Jeremy. “It really was. We’d never had her in an environment like that before.”
It was during that trip in July 2009 that Jeremy and Amelia realized Elizabeth’s behavior wasn’t just the terrible twos. “I’d say that’s when things clicked,” said Jeremy. “Everything – the jumping up and down, the flapping – that’s when we really noticed (there was something else wrong).”
It was then that they started their journey toward an autism diagnosis, working with doctors and finally hearing the words they anticipated in March 2010. “We knew what was going on,” said Jeremy, who has worked with adults with disabilities. “Our world didn’t come crashing down. There was no depression. We just got to work.”
Genetic testing also confirmed that Elizabeth had a duplication of the 22nd chromosome, which could lead to other problems with her health and development. Immediately, Jeremy and Amelia sought help for Elizabeth. Having just moved to Wichita, they started making phone calls. That’s when they found Heartspring. Elizabeth began physical, speech and occupational therapies at Heartspring Pediatric Services in July 2010.
For her parents, getting into therapies, especially speech therapy, was extremely important. Instead of verbalizing her wants and needs, Elizabeth relied on acting out what she wanted. Instead of telling her parents she wanted juice, she would bring a cup and the jug of juice from the refrigerator. Additionally, Elizabeth wouldn’t socialize with other children. “(Playing with other kids) was something she lost interest in,” said Jeremy. “She would get nervous and throw tantrums.”
Working with speech-language pathologist Molly Murphy, Elizabeth is learning to expressively communicate through pictures and words. She uses the Picture Exchange Communication System (PECS) to help form sentences and tell others what she wants. “Simultaneously, Elizabeth’s verbal skills have dramatically increased,” said Molly. “She is now beginning to use short phrases that are meaningful and functional.”
Elizabeth is also working on receptive language skills with Molly and can identify pictures of nouns and verbs, match identical pictures, and sort objects and pictures by category. These are all big steps for a little girl whose only words were animal names when she first started therapy. “Now Elizabeth uses a variety of words, and they usually have communicative intent,” said Molly. “It was such a joyous moment when, on the first day back from Christmas break, Elizabeth spontaneously used words to tell me, ‘Want hug!’ She got some giant bear hugs for that.”
While Elizabeth is achieving great success in speech therapy, she is also making gains in both physical and occupational therapies where she is working on a variety of gross and fine motor skills.
Because Elizabeth lacked the focus or organizational skills to sit and complete a task, Mimi French, her occupational therapist, worked together with Molly to develop a very structured treatment plan for Elizabeth. Now, every therapy session is completed using the same schedule starting from the time Mimi gets Elizabeth in the lobby. Part of the schedule includes matching colored pictures to different task boxes for her to complete. “It took her two sessions to master the flow of this plan,” said Mimi. “She has made so much progress with the box system utilized during occupational therapy. She is now able to hold a chalk or crayon and follow a maze, match letters, put puzzles together, button large buttons, dress with little assistance and cut across an index card with good coordination.”
As a child diagnosed with autism, Elizabeth seeks sensory input to help her organize her thoughts, emotions and attention. Mimi has developed a sensory “diet” to calm Elizabeth when she gets too excited so she’ll be more ready for learning. “Two of the best activities are swinging in a net swing on her tummy or just laying on the mat on her tummy, “ said Mimi. “Eye contact and general focus to the activity greatly improves when Elizabeth is in a prone position.”
For physical therapist Cheryl Jabara, working with Elizabeth is one of the highlights of her day. “When I go to the lobby to get her for therapy she frequently will run up to me and give me a big hug or grab my hand to head back to the gym.”
Of course, there is also work to be done during her physical therapy sessions. “My primary goal for Elizabeth is to work on coordination tasks that will allow her to interact and participate in activities with her peers in school or in the community,” said Cheryl. “One of her favorite things to work on now is swinging and really it’s not work anymore. It has become a reward for her when her true work is completed.
Being able to play is something that’s often difficult for children with autism. And according to Jeremy and Amelia, Elizabeth’s imaginary play skills have increased since coming to Heartspring. “Most of the toys we’ve bought for her were never used the way they were intended. Her tricycle – she would just spin the wheel, not ride it,” said Jeremy. Today Elizabeth will put her toy animals in a horse trailer and drive them around. She will also pretend to be a ballerina like she sees on her “Tom and Jerry Nutcracker” movie and dance around the house. “A lot of her skills are really coming out,” said Jeremy. “She’s really flowering. It’s cool to see.”
Elizabeth has developed a unique relationship with her therapists at Heartspring. “She does things for (her therapists) that we can’t get her to do,” said Jeremy. “She shows up and it’s time to work. I can’t explain it. They’ve done a lot of good things for her.”
It seems Elizabeth has really taken a liking to Molly. “She loves Molly,” said Jeremy. “In fact, she calls her Dolly.”
Both Jeremy and Amelia are extremely pleased with Elizabeth’s progress. “It’s really awesome to have Heartspring. We’ve commented so many times on how far she’s come in such a short time,” said Jeremy. “It’s like it clicked for her one day.”
With new skills in tow, Elizabeth, now four years old, began attending pre-kindergarten classes in January. She even rides the bus to school.
“The decision to put her in school really centered on the social aspect of it,” said Jeremy. “It was really nerve wracking for us. Especially because we were going to send her on the bus, but she’s done fairly well.”
Heartspring hasn’t just been good for Elizabeth; it’s provided a supportive environment for her parents. “It’s nice to talk to people that understand,” said Jeremy in reference to the connections they’ve made in the Heartspring lobby. “There’s a calm here. We don’t worry about her jumping up and down because people understand here. And a lot of them are going through the same thing.”
Much of Elizabeth’s success can be attributed to the dedication of her parents. “Jeremy and Amelia have been involved one hundred percent since the initial evaluation,” said Mimi. “They accept everything about their daughter’s differences and work hard with therapists and at home to improve her functional skills.”
As with most parents, Jeremy and Amelia just want Elizabeth to be happy. Their biggest goal for her is to be able to communicate. “I think that will open so many doors,” said Jeremy.
As it is, Elizabeth’s future is filled with promise. And with the continued support of her parents along with the therapists at Heartspring, the possibilities are endless.