At 3 years old, Ava Myers is a shining example of the power of love, determination, technology and teamwork. She isn’t able to stand up or keep her head up without assistance. She is non-verbal and it’s difficult for Ava to raise her hands. But don’t be so quick to judge this book by its cover.
Ava’s arrival brought joy, hope and concern to her parents, J.D. and Jenni Myers of rural Hardy, Iowa. Over the next few months, Ava didn’t hit the developmental milestones that Jenni, who is a physical therapist, expected from her daughter. Concerned, Jenni sought answers from the medical professionals. Blood tests and doctors confirmed Jenni’s suspicions. Ava was diagnosed with a rare chromosome disorder known as Chromosome 22 duplication as well as a mitochondrial disorder, which is responsible for her severe physical delays. One of the first calls was to a team from Prairie Lakes AEA who have been working with the family since that first contact.
Dawn Higgins, Prairie Lakes AEA Physical Therapist, Cari Hepperle and Teresa Teague, Prairie LakesAEA Occupational Therapists and Missy Smith, Prairie Lakes AEA Speech-Language Pathologist, help Ava communicate, move, learn and grow.
This little girl with big brown eyes, a huge smile and pigtails continues to surprise her family, AEA staff, teachers, friends and medical professionals with the things she understands and can do. Each day brings a new adventure or discovery in what Ava knows and how she can communicate.
Missy Smith, Speech-Language Pathologist, has been working with Ava to discover the ways she can communicate. Sign language proved too difficult for her because she lacked the physical strength to lift her arms. Missy shows her pictures, asks questions and Ava is able to communicate either by lifting her arm with assistance or by looking at the appropriate picture.
For about a month, Ava has been working with an Eye Gaze communication device, a device that looks like a computer screen and is loaded with a variety of choices. It tracks her eye movement so Ava must look at the specific icon for a few seconds in order for it to select and announce her choice or what’s on her mind. When asked where her mom cooked dinner, Ava was able to flip through the screens to the kitchen setting where she selected the microwave.
“That’s pretty accurate,” Jenni laughed.
Prairie Lakes AEA staff advocate on Ava’s behalf to help her get the resources she needs. They have written letters of recommendation to insurance companies, organizations, doctors and manufacturers on Ava’s behalf. Higgins was able to secure a Power Chair that Ava operates with by using her head. This has opened up another avenue of freedom for Ava as she is able to drive herself where she wants to be rather than where someone pushes her.
“The AEA is helping her become more independent,” Jenni said. “Maybe someday she will be able to have a job and drive and communicate in her own way. Now, the sky’s the limit and Ava has the chance to be valedictorian, a taxpaying citizen and productive member of the community.”
“We are learning just how smart she is,” Jenni said. “She knows what she’s talking about and what she wants. I just have to figure it out.”
She likes music. She can read and count. Ava’s language comprehension tested at a 6-year-old level. She is stubborn and determined.
“We still have to remember that she’s 3-years-old with a personality and attention span like any other 3-year-old,” Jenni said. “The AEA staff is really good at keeping her progressing so she is learning as much as she can.”
Consistency and communication from the AEA are key for Ava’s success. Jenni cringes a little every time a budget ‘reallocation’ or cut is announced for the AEA. Budget cuts can mean therapists that are already spread out across multiple counties are required to take on more kids. Ultimately, this can result in decreased therapy time for Ava and/or a new therapist for Ava.
“Young children need consistency among their therapists to develop a trusting and goal-oriented relationship,” Jenni said. “The therapists have to know what Ava is capable of, when to push her harder and when she needs a break. They make recommendations to us and physicians on a weekly basis. They must understand each child’s unique situation. These relationships can only be developed over time. Parents must also develop a relationship with the therapist so that understanding and follow-through with the recommended programs occur. I always worry when it comes time for contract renewals or budget allocations because it could mean those relationships have to start all over again, and Ava’s developmental success could be dampened during that time.”