The girl, who was two months shy of 2, had lived in an orphanage since birth. Her diagnosis of Amniotic Banding Syndrome, caused by the entrapment of fetal parts in fibrous amniotic bands while in utero, had resulted in fingers missing on both hands and the amputation of her left leg. She also has expressive language delays and is mostly non-verbal.
That made no difference to Michelle and Daniel, who had hoped to adopt a child with special needs. They knew in that moment that Maren would be their daughter.
“We immediately said, ‘Yes,’” Michelle recalled. “We feel God chose her for us.”
Maren joined the Boatman family in the fall of 2011 and was immediately enrolled in the Missouri First Steps program, which is administered in the Columbia area by Boone County Family Resources. Since Michelle is an occupational therapist and Daniel is in education, they were familiar with BCFR and the First Steps program, which is Missouri’s Early Intervention system that provides services to families with children, birth to three years of age, with disabilities or developmental delays.
“The Boatmans have done an amazing job in supporting Maren and her needs and opening their home and heart to care and love this little girl who has given their lives so much,” said Mandy Rooney, Maren’s Support Coordinator at BCFR.
In the beginning, Beth Pini, Maren’s First Steps Support Coordinator at BCFR, met with her new client’s team of professionals and family members to develop a plan of services to meet Maren’s needs. She was set up with physical and speech therapists and was fitted with a prosthetic leg within two months of coming home.
To help Maren use her prosthetic leg, Beth was instrumental in BCFR’s purchase of an Electro-Therapy Unit. The device uses electrodes to stimulate Maren’s lower extremity muscles, making them stronger and better able to support her new leg. Today, she has a nifty MU Tiger’s prosthetic.
In the fall, when Maren turned 3, she transitioned out of the First Steps program and is now preparing to enter the Columbia Public School’s Early Childhood Special Education program. Mandy, Maren’s new BCFR Support Coordinator, now meets with Maren’s team, making sure that she continues to receive the services she needs.
For example, Maren continues to receive physical and speech therapies. She also continues to participate in adaptive gymnastics because it helps her build strength and coordination which are necessary for using her prosthetic leg.
Maren’s newest discovery is communicating through the use of an Apple iPad with a TouchChat communication application. Maren is mostly non-verbal and sign language isn’t an option because she is missing fingers. Michell decided to try the iPad after reading how the device was being used successfully by other children with limited language skills. Because her daughter had spent the first 22 months of her life in an orphanage, Michelle thought it especially important that Maren learn to trust that she can make her needs known at home and in the community.
Maren took to the iPad immediately.
“She picked up on it even within the evaluation session when the OT and ST were evaluating to see what type, if any, augmentative communication device would be appropriate,” Michelle said.
Now that Maren can better express herself, her family has a deeper understanding of her needs.
“For example, if she starts to get frustrated about not being able to express her needs,” Michelle said, “she will go get the iPad and use it to help tell us what she wants.”
Like the other services she receives, the iPad is opening a whole new world to Maren.
“I think for her, it has helped her confidence in new situations or when we are not present,” Michelle said. “It has helped facilitate trust – just knowing she can make her needs known when she wants to.”