I first met Nicholas in July 2007 when he was one-year-old. Nicholas was a beautiful little boy who had a tube in his neck to assist with breathing; it also had a special valve that allowed him to talk. He also had a tube in his stomach where he received his feedings. Nicholas couldn’t hold his head up for very long, sit by himself or maintain his balance without help. To be honest, when his therapeutic team initially met him, they knew he had spunk but believed his physical capabilities for walking, sitting, talking, eating, etc. would be limited.
Because I initially worked with Nicholas through the First Steps of Kentucky program, we held his therapy sessions at home. Upon arriving for our first session together, Nicholas’ dad said, “Don’t sit on the rug.” So we sat on the couch. Dad later explained other therapists sat on the rug with Nicholas, tipping him off he’d be asked to do “therapy work.” I realized Nicholas was a smart one-year-old to know he’d be asked to do something challenging and difficult for him. We’d meet on Tuesday afternoons, and it became a running joke that if I was coming to see Nicholas, it’d rain or storm. It never failed. For months, it rained or stormed every Tuesday I’d see him; we even waited out a tornado warning together once.
Nicholas had a lot of difficulty swallowing, and anything he took by mouth would end up in his lungs. He couldn’t even swallow his own saliva, and as a result, was wet all the time. He wore a large bib that needed changing frequently, with an additional cloth kept close by to catch extra saliva. To better understand his swallowing pattern, I wanted to get a special x-ray made of Nicholas actually swallowing. Because Nicholas had been through countless medical procedures in his first year of life, he became upset and uncooperative when we tried to take it. We tried again a few months later and it was a disaster! Even with sedation to calm his nerves, Nicholas fought us, spitting food all over his mom, the technician, the equipment and me!
Despite these unpleasant times and no x-ray, we continued working on Nicholas’ swallowing using neuromuscular electrical stimulation which runs mild electrical current through his swallowing muscles to exercise them. Nicholas’ day nurse and his family also helped oral muscular stimulation by using a vibrating toothbrush, flavored candy sprays and neck and facial massages at home. Just last year, four years after our first attempts, we finally got two x-rays of Nicholas’ swallow. He was a real trooper. Nicholas also has a movement pattern called extensor tone that causes his body to react by moving backwards and stiffening when something comes towards his face or body, even his own hand. This physiological challenge continues to be a struggle for Nicholas, but his therapists and family find creative ways to decrease this reaction when he brings a spoon to his mouth.
In working with clients, especially a child, you become very involved with the family. Initially, Nicholas had so many doctors and therapists working with him, so it took awhile for us to build a trusting relationship. Nicholas has a very supportive family. His mother and I have things in common, such as working in healthcare and both our dads had extended illnesses before passing away.
Nicholas is a very engaging young man. Even with difficulty talking, he had social skills equal to his age. One thing Nicholas could say was, “I du” which meant “I good.” Nicholas continually surprises us with his abilities, and it’s not been an easy road with many challenges along the way. Nicholas now eats some items but still has a tube in his stomach. His breathing tube is long gone and he is doing great with his speech. In fact, he was once spontaneously interviewed on a WBKR remote at Shoguns which I happen to hear on the radio. I clearly understood him and called his mom to let her know I heard Nicholas. He commented, “I sure am glad I was using my sounds.”
Nicholas, his family and I’ve been on a wild ride as we’ve challenged him to do his best with the things that are hardest for him. It’s been great to help him become a part of a regular classroom at school. And I’ve enjoyed watching him blossom into a very social young man.
In the Next Blog Entry: Final Days with Nicholas - “I told Nicholas I wouldn’t be coming anymore to watch him do his therapy. His disappointment rang obvious as he kept asking me why . . . . .”
We want to hear from you! Please share your responses and comments by clicking below on “Comment” – you may post them anonymously or using your gmail.com profile name.
“The educated do not share a common body of information, but a common state of mind.” ~Mason Cooley
Please share our blog with others via Facebook, Twitter, or email! Follow our blog! Click on “Join our Site” below.
Blog content is copyrighted property of Wendell Foster’s Campus for Development Disabilities and Carolyn Smith Ferber and/or other blog authors). Content may be used, duplicated or reprinted only with the expressed authorization of the Wendell Foster’s Campus. Permission for use, duplication or reprints may be made to wfcampus.org@gmail.com.
