Friday, June 19, 2009

Caleb's Story

Caleb was born November 27, 1999. He was due on January 1, 2000. He weighed 5 pounds 10 ounces. So, he came into the world a little early and struggled to breathe. He was on oxygen only for one day, which was the first of many miracles in his life. It is my belief that Caleb is a “barer of Good news” just as his name sake. So his story should reflect all the Lord has done in his life.
Caleb stayed in the hospital for 1 week. For a preemie to only stay a week was quite miraculous. Caleb was born with no sucking ability so nursing was very difficult for him. He was fed by tube and bottle for the first couple of days of life. Then the bottles were given that allowed more milk through the nipple. After arriving home Caleb continued to learn the process of nursing and by 2 months he was finally able to nurse and suckle correctly. This was just the beginning of a long journey. We had no idea that Caleb would have to learn everything that should be an instinctive behavior.
At 6 months family and friends began to point out that Caleb was not developing normally. He still could not raise his head. He had very little muscle tone and seemed like a limp rag doll in your arms. We took him to a specialist in San Antonio for testing. The doctors were always concerned about his weight, but now something much bigger was of concern. Caleb held his hands in a fist and never spread out his fingers. He did not extend his legs and he had no head control. The specialist concluded the Caleb had Cerebral Palsy. The doctors of course gave us a bleak outlook. Hey said there was a chance that Caleb may never walk and at best it would take until the age of 2 before he might take a few steps. This was devastating news for everyone but we knew that our God was bigger than this diagnosis. So we held on to the hope that our Lord would heal him.
After the trip to San Antonio, Caleb was put into physical therapy 3 times a week. The first goal was to strengthen his neck. We did a series of exercises to stretch the muscles and Caleb responded well. By 8 months old Caleb could finally hold up his head and he was rolling over at 10 months. At 1 year old Caleb was able to balance enough to sit up. He was making progress with the extensive physical therapy. Since Caleb didn’t have the natural instincts nor the muscle tone to push and pull we had to teach him everything. The therapist showed us how to work with him and one of the hardest things to do was rotate Caleb’s legs against his will. He would scream and cry as the muscle were worked and stretched. But all that paid off the day he pushed up to his hands and knees to the crawling position.
I will never forget that day. We had just moved to Amarillo from Victoria. On the floor of the living room was our large antique mirror. Caleb was sitting next to the mirror as I removed the wrapping from it. He leaned over and saw his self. He actually braced his body with his arm. That is when I picked him up and put him on his tummy. Then he did it! He rose to his hands and knees to see himself. He had the strength to crawl now. Praise the Lord.
Crawling was quite an interesting concept to learn. We had to move Caleb’s legs and arms in sequence and give him the sensation of moving on his own. After this we would model for him. I am sure it was quite a sight to see grown adults moving around on their hands and knees. But it worked! First, Caleb army crawled backwards, then finally forwards. Then finally the crawl came at 15 months. During this time Caleb discovered he could push with his feet and he started to stand next to furniture, but only when we put him on his feet. He still did not know how to transition from crawl to standing. We again had to teach him the steps and model for him. The Lord really helped Caleb through these tough times. He prepared us for the next steps to get Caleb to walk.
Walking, that is very scary for a child who has no reflexes. Caleb was not born with reflexes. Again we had to teach him how to catch himself. As we walked with him hand in hand, he depended on us totally for his balance and when he fell we had to catch him. I am sure we were a funny sight when he took his first step, Mom and Dad in a hovering position, praying and smiling, coaxing and begging for a step. Then it happened! He took a step then 2, 3, and made to see his daddy. It was almost a year from the doctor’s diagnosis and Caleb beat the odds. He was walking at 18 months. We laughed and cried, as relief and joy flooded our hearts. Caleb got several bumps and scrapes on his head but he made. God did a miracle in his life. As he was going through physical therapy his verbal skills and language development suffered, in fact it shut down. The doctors and therapists said this would happen, so another chapter began.
As Caleb received his physical therapy he started speech therapy. Caleb was focusing so much on learning to move that he stopped talking. So now the goal was speaking. No more grunting and pointing for things. He had to use his words to communicate. So his therapy sessions were 2 fold. As he tried to stack blocks he had to count them or say a color. All of this was very taxing on his brain. But he persevered and by 3 years old he was running and talking in short sentences. God once again was with us and Caleb graduated from physical therapy. Most people didn’t notice his differences, only the doctors could see them now. The doctors were amazed at Caleb’s progress and we could only give the Lord credit for Caleb’s healing and accomplishments, because without Him, we could not have done it. God was not finished with Caleb and in the next years that followed God revealed himself to us in so many more ways.
Part 2 Caleb’s Story
As Caleb grew we found ourselves in new territory. Caleb was accepted in a “Special pre K” program in Georgia. There he learned the basic communication skills for children with special needs. He was in a class of 8 kids, all of which had some sort of disorder from mild to serve. Caleb was only diagnosed with speech problems and the other tests were inconclusive. He loved being the in school and connected with the children who needed a friend. He was able to understand them, play with them and love them for who they were. We knew that this was one of Caleb’s giftings. Caleb did struggle with play time. He did not understand what “pretending “was nor how to do it. We tried many times at home and with church friends but to no avail. We also began to notice a fear in him that was unexplainable.
By the time we moved back to Amarillo from Georgia Caleb was 4 and back in pre-k. There he flourished academically except for writing. His small motor skills were delayed and writing/coloring was too hard. Once again we had more exercises to do at home. He worked so hard, when he wanted to quit we encouraged him and pushed him to keep going. He continued to struggle but made it through the year. He was such a brave little tike, he rode the bus to school every morning. That was the highlight of his year. He still did not pretend and his fear seemed to subside. But the next year would prove to be one of the most difficult. Kindergarten!
We moved to San Antonio in September and kinder started, a whole new world awaited Caleb. The classes were big and it seemed to overwhelm Caleb. His fear increased and his behavior changed. He acted out in class and cried a lot. We had many discussions with his teacher but nothing changed. We had just started going to a new pediatrician and by God’s grace she was also a behavior specialist in ADHD. She diagnosed him in January and Caleb was put on medication. She also discovered that he was left handed and the teachers had been teaching him right handed. This just further complicated and slowed his development. But now we knew and he could have help. The medication seemed to work and he did better in school. We still knew there was something wrong but we continued to pray for God to show us.
First grade was the turning point for Caleb. His development seemed to improve. He was reading and his math skills were really accelerating. He understood 3D puzzles and could do fractions. But he still did not have many friends and it was evident that he struggled to communicate with others. He seemed awkward and alone, his self esteem was suffering. He did well in school but we felt he had some foundational learning problems. He was slipping through the cracks. We did have some victories. Caleb learned to ride his bike after 2 years of trying he finally succeeded. He also learned to pretend and he loved to play with his little sister. He was definitely more comfortable with younger kids and his self esteem seemed to rise around them. We went on a family vacation the day after school was out. This vacation showed us even more about what was happening inside Caleb’s mind.
Disney World, every kid’s dream vacation. For Caleb, some attractions proved to be disasters. He rode the roller coasters and saw the characters. He loved all the parks and the rides until “figment of the imagination” which was a toddler ride. We thought a journey through the senses would be great for Bekah but it turn out to be torture for Caleb. From the time he could crawl we knew he was tactile defensive. He did not like rough things touching him. He would cry or scream. He seemed to have adjusted to these things by 7 years old, but the other senses were more sensitive than we thought. While on the ride the character sprays a skunk smell and squirts water. The lights change colors and the noises are loud and soft. Well this was sensory overload for Caleb. It scared him so bad that he got out of his seat and hid under it. After the ride you visit the laboratory. Well after this terrifying experience Caleb could not stay in the lab. Even though Bekah was picked for the show and was having the time of her life at 3 years old. Caleb was begging to leave. Jeremy tried to give him candy to calm him but it did not work. It wasn’t until we left the building that he calmed down. He said,” Wow, I am glad that is over.” He seemed fine the rest of the day. Caleb’s behavior that day alerted us to take more steps to helping our son.
We decided to home school Caleb for second grade. We had him tested in the fall, through the public school system, for any learning disabilities they could find. Well the results were inconclusive and we were back at square one. We had him evaluated and still no diagnosis. At this point we decide to trust that the Lord would show us when we needed to know. We continued home schooling and prayed for Caleb to find success and for the Lord to lead us in building his self esteem. He did better and he loved school. He loved going to all the field trips and meeting new friends. The environment seemed to suit him better. He also started golf lessons. Caleb did very well for an 8 year old and he seemed to have such a peace about him when he played. He joined the junior golf league and loved playing in the tournaments. We had finally found something he loved. God provided at the right time. The next year would be the best year yet.
At the start of his third grade year, we were still searching for answers about Caleb’s behavior and learning disabilities. After much prayer and searching we came across a program that tested cognitive ability. We had been to the neurologist and still didn’t get any answers. So when we found a cognitive based test that could tell how the brain was s functioning we jumped at the chance to find out more. The test results proved what we had thought. Caleb was struggling with learning disabilities and he was exceptionally smart visual learning. From the results we were able to confirm that he needed help with verbal skills, processing speed, short and long term memory and auditory processing. His visual processing was the equivalent of a 25 year old. So he was gifted but he needed help in foundation areas of the brain. We were able to get that help and now Caleb’s brain is able to function on grade level. His medication has been cut in half and he is very confident in who he is. Caleb still has indications of Asperger’s syndrome and we will be visiting another neurologist this year to have some evaluations done but God is in complete control. Caleb is his and whatever God has for Caleb is better than we can ever imagine. Caleb’s story is not over and we will continue to give God the glory for all the miracles he does in Caleb’s life. Only God knows the impact Caleb will have on this world, but I have a feeling it will be a big one.

1 comment:

  1. Though we have lived Caleb's story with you (not as intimately as you!) it was good to see it all put together. Praise God for what He has done! Caleb, we are proud of you!