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The success of on-going HOPE

Some families strike our hearts in such a way that their story is unforgettable. These families became part of the greater Jacob’s Ladder family and this connection can become incredibly strong. No matter where a family is located, the thread that is the HOPE of Jacob’s Ladder may begin in Roswell, GA, but can stretch across the globe.

One of the greatest examples of this connection is evidenced in Connor and his family. When Connor first came to Jacob’s Ladder, he was only 6 years old, and his parents had already completed numerous evaluations in order to determine the best care for their son. With a diagnosis of SCN2a, Connor presented with severe challenges. This genetic disorder has been identified to be a common cause of neurodevelopmental complications in children, specifically linked to autism, epilepsy, learning delays, and movement disorders.

For Connor, this diagnosis resulted in seizures, challenges with language and mobility, as well as an overall heightened sensitivity to any tactile, auditory, and visual stimulation from his surroundings. Due to the level of his sensitivities, Connor’s family’s life was impacted; car rides, grocery shopping, and other everyday tasks were extremely challenging for them as Connor was not able to process his environment and would typically cry during all these activities.

After hearing about Jacob’s Ladder, Connor and his family traveled to Roswell, GA all the way from San Diego, California for his initial evaluation. Upon receiving the results of the evaluation, which included a individualized neurodevelopmental program designed to address Connor’s sensory and gross motor needs, Connor’s family enrolled him in a 2-month on-site intensive.  After seeing functional improvement in those 2 months, Connor’s family made the decision to relocate to Roswell and enroll him in full-time programming.

Connor’s programming began with addressing early developmental milestones. As he couldn’t tolerate laying on his belly, he first began working program activities requiring him to lie prone for small durations at a time. As the summer continued, Connor began to tolerate being prone for longer periods of time, which allowed us to begin introducing more foundational activities to address gross motor capabilities. This intensive work led to Connor being able to crawl on his belly for the first time ever. These foundational pieces were integral as they laid the groundwork for Connor’s brain to reorganize so that new neurological pathways could form. Now a master at belly crawling, Connor is now working on the next level gross motor movements, including standing and bearing his weight, as well as walking with support.

Gains in gross motor milestones were accompanied with successes in language development. At his initial evaluation, Connor’s receptive language was relatively unknown. Due to his sensitivity to his environment, Connor was unable to process and understand any language. In order to address his sensory needs, Connor worked a sensory motor intensive for first 3 months of full-time enrollment. Due to working foundational pieces, we were able to see a shift in Connor’s overall demeanor following the sensory motor intensive and how he processed sensory input; he no longer cried in response to touch or sudden changes in sounds.

These functional changes enabled Connor to be able to begin working receptive language activities. These eventually led to him to receptively identifying photos of familiar faces and of familiar items. For the first time, Connor was able to show his family that he knew who they were. His language continued to grow and expand, including receptively identifying previously unknown objects, body parts, colors, shapes, and uppercase letters, just to name a few. This language growth enabled him to move from identifying photos to identifying sight words. At his last evaluation in November 2017, Connor’s program now includes an introduction to functional communication, utilizing his reading ability to start communicating his wants and needs.

In conjunction to his incredible language development, Connor continues to make great strides in other areas. One of the most notable changes has occurred in his feeding ability. When Connor first arrived at Jacob’s Ladder, all nutrition and food intake was completed via a feeding tube. Having never fed by mouth, Connor’s brain had never learned to process intra-oral input. By completing the sensory motor intensive, we were also able to see a decrease in Connor’s intra-oral sensitivity. As we have continued to address his oral motor capabilities, including the use of his lips and tongue, Connor’s food has completely changed. What was once all pureed nutrition delivered via a G-Tube, Connor’s diet now consists of 100% feeding by mouth.

However, living split between San Diego and Roswell proved to be challenging for Connor, his parents, his 2 bothers, and his actively involved grandparents. The decision was made to return to San Diego, and in order to continue Jacob’s Ladder programming, Connor’s family enrolled him in the PODS of Care program. Connor’s grandmother acts as his PODS provider, completing the same individualized neurodevelopmental programming on a daily basis. The growth that was seen while he was on the Roswell campus has continued to prevail through the dedication and commitment of his family. Even while on the opposite coast than where this journey began, Connor and his family have remained an integral part of the Jacob’s Ladder family, exhibiting the definition of on-going HOPE.

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