Young Teen Receives the Gift of Communication

Zachary Richter has faced numerous challenges in his 15 years. Born with Down’s Syndrome, he has endured several serious health issues, including two open heart surgeries, a possible stroke, and a diagnosis of autism, which has resulted in his inability to communicate verbally. Although he knows some sign language, his ability to sign is hampered by the lingering effects of the stroke. 

As Zachary became older, it was apparent to his mother and father, Stephanie and Jim Richter, that he was becoming increasingly discouraged by his inability to communicate. “We would go to family gatherings, and he couldn’t engage with anyone. I could see how frustrated Zachary was getting. I watched how he would try to interact with people, which made me sad,” says Stephanie. “I downloaded communication programs from the internet onto an iPad, but they just didn’t work for Zachary. As a certified occupational therapist assistant, I knew there were communication devices available that might be able to help him. So, I made an appointment with a speech pathologist at the Firelands Children’s S.P.O.T. for an assessment.”

Firelands Regional Medical Center’s Children's S.P.O.T. serves children with individualized needs in a playful, child-centered, encouraging environment. Pediatric occupational, speech, and physical therapies are offered in a fun learning environment to help children improve function and confidence in their skills. Each therapist integrates highly specialized training into therapeutic activities and works directly with parents to promote the child’s success in therapy. Therapists consider the whole child and how their body functions, then reduce or eliminate barriers to development and focus on their strengths to build their undeveloped skills.

Stephanie was an occupational therapy assistant for 18 years at Firelands and was familiar with Children’s S.P.O.T. She could not continue working at Firelands as Zachary grew older because his needs became more significant and required more of her time and attention. She now provides occupational therapy assistant services virtually, which allows her to focus on caring for Zachary when he is not in school.

Rachel Ryan, a speech-language pathologist and Natural Language Acquisition (NLA) trained therapist at the Firelands Children’s S.P.O.T. assessed Zachary and developed a plan. “Zachary had a lot of alternative communication strengths, such as gestures (pointing, showing, and physically leading a communication partner) and limited spoken words (ie,“no”). However, when I met him, his communication skills were not consistently matching his communication intentions due to growth in receptive language skills and life experiences. I thought he would benefit from an augmentative alternate communication (AAC) device. I started him on different models and layouts, and he had immediate success with a high-tech complex communication system,” says Rachel.

The goal of an AAC device is to provide reliable and autonomous communication to the individual utilizing it. In other words, an AAC device allows people with complex communication needs to say what they want to say to whoever they want to, whenever they want to. 

After experimenting with different models and vocabulary layouts, Rachel determined which device would be best for Zachary. She worked with Stephanie and Jim to customize the language to their lives, which would increase his ability and willingness to use the device.

“Sometimes children his age are so frustrated with their perceived communication limitations across environments that they no longer feel their communication attempts are valued. In my experience, this can negatively affect a person’s overall social, emotional, and medical well-being. This experience observed to align with Zachary’s situation. He has struggled his whole life with communicating messages that were authentic to him. It is easy to see why he might resist trying something new after so many negative experiences. His immediate success and determination to use the AAC device as a communication support was admirable,” says Rachel.

Because of the costs of Zachary’s continuing medical issues, the Richters needed financial assistance to buy the AAC device, which is not covered by many insurance plans. Rachel referred them to the Firelands Children’s S.P.O.T. benefits counselor, who encouraged them to apply to Julian’s Fund of The Foundation for Firelands, which was established by an anonymous donor after her daughter and son-in-law struggled to find the appropriate services and cope with the financial burden of caring for their autistic son.

Julian’s Fund assists the families of pediatric patients who receive therapy services at Firelands Children’s S.P.O.T. who can demonstrate financial hardship related to the costs of receiving therapy services or therapeutic interventions due to limited or inadequate insurance coverage. The Richters met the requirements, and Zachary received his AAC device.

Zachary’s success with his AAC device offered a new approach for him to express his emotions, thoughts, needs, and ideas. Rachel noted that he can now communicate joy and happiness, which he could not express before. Zachary is beginning to identify where he’s having pain, and he can tell his parents when he is not feeling well. Especially gratifying for Stephanie is that Zachary can now express affection, which is very difficult for him because of his autism. “His device records what buttons he has pushed throughout the day, so I can see what he’s feeling even when he is not with me. He presses ‘mom’ a lot on his board, so I know he’s thinking about me,” she says with a smile.

“As a certified occupational therapist assistant, I always had the “head” knowledge of treating children with disabilities and what it must be like as a parent to have a child like Zachary. After he was born, I developed the “heart” knowledge. I know what it’s like from the other side now.”