Real Story

          For first-time parents who had a normal pregnancy and typical delivery, the news was a shock. About 24 hours after Harper was born, Melissa and Jason first heard about the possibility of their daughter having Down syndrome. With no immediate health issues often present with children who have Down syndrome, no one except Jason, who is a pharmacist, questioned the possibility. He looked for some common characteristics of infants with Down syndrome but didn't notice any in his daughter. Early chromosomal testing gave an initial indication of Down syndrome and about two weeks later, Harper was referred to Children's Mercy Hospital where a formal diagnosis was confirmed.

          Fortunately, their physician understood that Melissa and Jason would have many questions and asked them to write them down. Two days after Harper was born, their physician sat down with Melissa and Jason and listened to all their concerns. "We were lucky because she was nothing but positive and helpful with getting resources," says Melissa.

A Warm Welcome

          When the search for a childcare program began, Melissa and Jason were able to enroll Harper into a program at the University of Kansas. "When I first called the program, I felt like the coordinator there was gushing over the telephone to get my daughter into their program," Melissa said. As the new mother of a daughter with Down syndrome, such a warm welcome was the start of a good relationship.

          Melissa learned about her local Infant-Toddler Coordinating Council (ICC), now called TINY-K program through the coordinator in the childcare program. When Melissa first contacted ICC, she was not only impressed by the available services and support but also by the positive attitudes of the staff. Shortly after the initial contact, the ICC team visited with the family and discussed their goals, visions, and needs. "From their confidence and positive attitudes, I knew that they are going to do whatever they can do for Harper," said Melissa. From that point on, Harper has received such services as occupational and physical therapy, and speech language therapy.

          To serve families best, the ICC staff team held a weekly meeting. In the meeting, the service providers, such as Cassi who is one of the primary providers for Harper, discussed where they were and what they need to focus on. According to Cassi, focusing on what every family needs and providing support based on those needs is the key role of an early interventionist. By incorporating several different models such as the transdisciplinary model, primary provider model, and coaching model, the team was able to pursue the same goal in various ways. For example, when Cassi visited, she not only worked on motor skills but she also tried to embed Harper's speech goals into their time together.  

Staying on the Same Page

          Melissa and Jason wanted to provide Harper consistent support at home, at her childcare program, and during ICC visits. In response, the team came up with the idea of rotating the location of visits between the home and childcare program. Melissa said, "Harper spends seven hours at the child care program every day. It is important to keep them on same page."

          After every ICC service provider visit, a note was provided containing information on what Harper did, what they had worked on, and what need to be addressed next. Melissa treasured these notes not only because she could learn what had happened during the visits to the childcare program but also because of the way the notes were written. "Every parent loves to see positive comments," Melissa said.

          In addition to ICC and the early childhood program services, Melissa and Jason did their best at home. When the ICC staff visited, Melissa and Jason took turns being at home and meeting the service providers. It allowed both parents to be on the same page regarding Harper and to be able to provide consistent support.

Family Strengths

          One of the strengths of the family was the support they received from their extended family. The first grandchild on both sides of the family, Harper basks in the attention and love expressed by the entire family.

          Jason also was a source of strength. He knew how to find information and handled it well. He always wanted to be involved in Harper's education. From the day Harper came home from the hospital, Jason read to Harper everyday. Melissa calls the reading time "their thing." She strongly believes that Jason being an involved father has contributed positively to their daughter's development.

Harper's Gifts

          Melissa and Jason believe that Harper has brought many wonderful things to their lives, not the least of which was getting to know people such as Cassi. Melissa and Jason believe the services they received gave them an enormous amount of support.

          Currently, Jason and Melissa are actively involved in organizations such as the Down Syndrome Guild and TINY-K. The Down Syndrome Guild provides educational tools for parents, educators, and healthcare providers and sponsors social activities for parents and children. Jason and Melissa each have served on the board and assist with fundraising.

          Melissa's advice to other parents? "Don't be afraid to ask questions." She feels strongly that parents should have high expectations for their child, this is reflected in the expectations of  service providers. 

          Following Harper's third birthday, Melissa and Jason attended their first IEP (Individualized Educational Program) meeting. It was very different from what they were used to, but Cassi and another staff member were there to advocate for the family. Although Cassi is no longer the primary service provider for Harper, Melissa knows that Cassi will be there for Harper anytime. Cassi agrees. "They have my phone number on speed dial. They can call me anytime. They are my family."

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