Thursday, July 18, 2013

Caleb's Development and Recovery

Post by Marcia Johnson

Caleb came to our home, orphaned, at age 1 after being severely injured in a car accident.  He is the youngest son of Keith Johnson, who is my husband’s brother. His mother Nancy and I were good friends. Both of them were killed in the same accident that injured Caleb. Prior to the accident he had taken his first steps and was a charming, engaging, and loving baby.  When he came home from the hospital he was listless and uninterested in his surroundings. He paid most attention when his two older sisters were around. He did not hold his own weight and could not sit or roll or crawl. So, it was an eventful day when a few weeks later, with support under his body, he coordinated his movements in a crawl pattern.

We received home therapy services from Kids on the Move, an early intervention organization. The occupational, physical, and speech therapists that came from Kids on the Move were terrific in their treatment of him, their training of us, and their encouragement. They asked us to set goals. It was simple at first. We had a goal that he could walk and talk. We didn’t comprehend that there would be further clarifications such as walk without falling, talk and be understood, etc.

The focus in his recovery started with stimulating him to respond to the stimulation. A houseful of kids, which we had, was a perfect set up for this. (He had come into  our home of 6 children, ages 17-5, and he had come with his siblings, ages 14-5. So, there were 10 older children who chased around doing their own thing and engaging him in their thing and taking an active interest in his progress.) There were many painful parts of life at that time and focusing on his progress helped to ease some of the pain. They played with him, imitated what the therapists did, talked to him and sang to him and encouraged him to imitate them. The energy of 10 children focused on him and surrounding him was powerful.

Services from Kids on the Move end when a child turns three. That was a heart-rending transition for me. It was very difficult. Under their tutelage I had begun to bond with Caleb in ways that I wouldn’t have known how to do without them. They had been a tremendous source of strength and set a foundation for us to build on.

We transitioned into a public school special needs pre-school with therapy services and a private, local physical, occupational, and speech therapy clinic. By the time he reached kindergarten, he was still falling occasionally, but speaking clearly and distinctly and learning easily. He had some challenges with learning, but his biggest challenge was in processing. He processed what was coming into his brain much quicker than what he was trying to pull out of his brain. Any amount of additional stress to the processing slowed it down further. So, when he thought something and then said it he was fairly fluent; but when he was asked a question, formulating an answer was much more difficult. When the questioner would rephrase the question, it just complicated matters because then he had to compare both questions as well as answer.

The nature of how he learns has created a vocabulary deficit as he has not ‘picked up’ words from his environment as easily as he would have without his injury. That vocabulary deficit and the difficulty learning new meanings from the surrounding context creates a stumbling block to future learning as he gets stuck on unfamiliar words. But, he has patiently asked what words mean and built up his vocabulary as well as the ability to infer meanings.

After kindergarten and 1st grade in the public school system, he went to a very small private school for 2nd and 3rd grade where he had the opportunity for one on one, and one on 4 learning. Partway through 4th grade we transitioned back to the public schools.

Caleb is entering 8th grade this coming school year. We are grateful to wonderful teachers in his schools.

We have observed over time that Caleb learns well aurally. Once he has thoroughly processed something he has learned it for keeps. He learns well to music and has a beautiful singing voice, very true pitch, and quick melodic and rhythmic memory.

He loves to follow written or demonstrated directions to make things. Having a source to go to when he needs clarification benefits him.

Basically, we have seen Caleb be able to eventually develop anything that he has been specifically taught. So, I just keep thinking if something is in his way we have to figure out what the components are and then go about teaching him those pieces so that he can then access the new skill. These same principles seem to apply to physical, cognitive, and emotional skills.

We have been privileged to receive direction for his recovery from Dr. Such-Neibar. at Primary Children’s Hospital in Salt Lake City. His life has also been greatly blessed and impacted through the care of Dr. Donaldson, pediatric endocrinologist. Besides physical, occupational, and speech therapy he has received vision therapy, neuro-feedback therapy, and completed a program called Learning Technics , CEO John Heath. Each modality has added to his recovery and to our understanding of what challenges he is facing.

One by one, the 10 children who were initially involved in his recovery process have launched their own lives. He is soon to be the only one of the eleven children still at home. Each of them continues to play a role in his development as they share their time and natural and developing expertise with him in various ways.

My husband, Lane, has always been involved in the mix of all the kids. Now, the dynamics will be substantially different with just the three of us home and we look forward to learning about this new family stage.

We love Caleb dearly and have loved our journey together.



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