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Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
Partnering With Physical Therapists and Speech-Language Pathologists in Early Childhood to Promote Access to
Bethany M Sloane1, Stefan Vincent1, Stephanie Crawford1
1Department of Pediatrics, Oregon Health & Science University, Portland, OR; and.
Insights
This case study explores integrating assistive technology for children with developmental disabilities, focusing on a young boy with Rubinstein-Taybi syndrome to enhance his communication and mobility.
Area of Science:
- Pediatric Medicine
- Developmental Pediatrics
- Assistive Technology
Background:
- Case study of an 18-month-old boy, Noah, diagnosed with Rubinstein-Taybi syndrome (RTS) due to a CREBBP variant.
- Noah presented with significant motor delays and limited independent mobility and communication methods by 9 months of age.
- Early intervention services including occupational and physical therapy were initiated.
Purpose of the Study:
- To address the challenge of timely integration of assistive technology for children with complex developmental needs.
- To explore how pediatric clinicians and therapists can collaborate to implement assistive technology solutions.
- To improve environmental exploration and communication for children like Noah.
Main Methods:
- Case report detailing the developmental trajectory and therapeutic interventions for a child with RTS.
- Focus on the need for assistive technology to bridge gaps in mobility and communication.
- Discussion of the collaborative role of pediatric clinicians and therapists.
Main Results:
- The case highlights the critical need for proactive and timely introduction of assistive technology.
- Early intervention facilitated some developmental progress but did not fully address independent exploration or communication.
- The central challenge remains the effective partnership between professionals to integrate technology.
Conclusions:
- Effective collaboration between pediatric clinicians and therapists is crucial for successful assistive technology implementation.
- Assistive technology can significantly enhance the quality of life and independence for children with developmental disabilities.
- Further research is needed on optimal timing and strategies for assistive technology integration in early intervention.
Case:
Noah is an 18-month-old boy with Rubinstein-Taybi syndrome, diagnosed at 3 months through genetic testing that revealed a cyclic adenosine monophosphate response element-binding protein (CREBBP) variant. At 7 months, Noah was socially engaged, smiling and responding to familiar caregivers, but his motor differences were evident: limited head control, frequent fisting of his hands, difficulty grasping objects because of syndactyly, the need for assistance with rolling, and difficulty tolerating time on his stomach.By 9 months, Noah was referred to Part C Early Intervention services and began occupational and physical therapy. With support, he was developing postural control and reaching skills. Still, his opportunities for exploration and communication remained largely dependent on adult facilitation. At this point, Noah did not have independent or reliable ways to move across his environment or consistent methods for communication to share his wants, needs, or make choices.The central challenge in this case: How can pediatric clinicians and therapists partner to bring assistive technology into the lives of children, like Noah, at the right time?
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