My real passion in nursing is to take care of special needs children. The whole reason I wanted to become a nurse, was to take care of someone that really and truly needed the love and care that I can provide them. During my pediatric rotation, I was given the opportunity to spend time at Project Help, which is an daycare for special needs children and integrates "normal" children in to act as role models. During this time, I was able to help care for a child with muscular dystrophy. The following is a journal of my experience.
Experience of a Child with Muscular Dystrophy
Abstract
This paper is an experience I had with a child with muscular dystrophy. This particular child is a student at Project Help. Throughout this paper I will refer to him as R for confidentiality purposes. Project Help is a daycare for children in Rutherford County with and without disabilities. The children with disabilities are worked with on a daily basis to meet their personal needs. The “normal” children are cared for and also used to help mainstream the disabled children. This program is funded by tuition, grants, contributions and donations; however, the families of disabled children are not charged a fee. Project Help serves children from ages 0 – 36 months with disabilities and 15 – 36 months without disabilities. R was observed for one day while going about his normal routine. This experience allowed me to learn a little about R’s growth and
development compared to that of a “normal” child.
Experience of a Child with Muscular Dystrophy
Muscular dystrophy is genetic disorder that is “a gradual degeneration of muscle fibers, and they are characterized by progressive weakness and wasting of symmetric groups of skeletal muscles, with increasing disability and deformity” (Hockenberry, 2005, p. 1204). Although this is a progressive disease and “most children with muscular dystrophy reach the appropriate developmental milestones early in life” (Hockenberry, 2005, p. 1204), R has been impacted very early in his life and is still working on meeting certain milestones in his development.
History, Care, and Development of Child
R is a two year old, Caucasian, male with muscular dystrophy. He lives at home with his mother and father. R goes to Project Help on Monday through Thursday from 8:30 – 11:00. He also receives physical therapy at another location throughout the week. (I was unable to gather further history because of privacy reasons and special rules at Project Help.)
R has remarkable muscle weakness. His facial muscles are weak so his speech is delayed but he could say recognizable words such as his name and “pot.” He has a very precious smile that would steal anyone’s heart. R can hold himself upright in his chair and his wagon. While in his wagon, he would rest his arms on a boppy pillow. He has limited movement of his arms and hands; however, he can pick up small pieces of food and put them into his mouth. R cannot chew well enough to eat a significant amount so he is fed via a feeding tube at home. He is unable to hold a cup by himself. With my help, R played in pudding on the table and we did the motions to “The Wheels on the Bus,” and he was able to bring the pudding to his mouth and lick his fingers. I was able to read to him at one of the centers and when asked to point out a certain object of the group of pictures, he was correct 100 percent of the time. R is able to place small red balls into an opening in a bucket, and is also able to string large beads with minimal assistance. R cannot walk, crawl, or sit on the floor alone. R has weak legs and to prevent contractures he wears braces on his feet that come above the ankles. R, as well as the rest of the children, is incontinent and wears diapers.
Once R arrives at school he is put in a center like every other child. They are allowed time to have “free play.” The teacher works one on one with R while the other children are at their centers. She helps him slide down the small slide in the classroom and was also assisted in doing exercises that helps with his muscle strength and tone. The teacher also worked on his speech by saying words and having him repeat them back to her, which he attempts to do every time. The teacher said that R has made significant improvement since he has been at Project Help. The one on one care that he receives is important for his development and growth.
Growth and Development of “Normal” Child Compared to R
The following table is a comparison of a “normal” child to R. It includes what a child at R’s age should be doing and what R has actually achieved or not achieved. It encompasses gross and fine motor, sensory, vocalization, and socialization skills. The skills of “normal” development were retrieved from Wong’s Clinical Manual of Pediatric Nursing.
“Normal”
R
Gross Motor: Goes up and down stairs alone, runs well, picks up objects without falling, kicks ball forward without overbalancing
Cannot walk or stand alone
Fine Motor: Builds a tower of six or seven cubes, aligns two or more cubes like a train, turns pages of book one at a time, draws vertical and circular strokes, turns doorknob
Can string large beads with minimal assistance; attempted to help me turn page of book
Sensory: Accommodation well developed; in geometric discrimination, able to insert square blocks into oblong space
Can put small balls into small opening in bucket without assistance
Vocalization: has vocabulary of approx. 300 words, uses two- to three- word phrases, uses pronouns “I, “ “me,” “you”, understands directional commands, gives first name; refers to self by name, verbalizes need for toileting, food, or drink, talks incessantly
Has small vocabulary; does not use two- to three- word phrases; points to objects when asked to; repeats words back; refers to self by name; uses sign language for “more” when wanting more drink
Socialization: Stage of parallel play, has sustained attention span, temper tantrums decreasing, pulls people to show them something, increased independence from mother, dresses self in simple clothing
Lets others play around him while trying to interact; long attention span; did not throw tantrum; did not fuss when separated from his mother; cannot dress himself
R’s gross and fine motor skills are not at the level of that of a “normal” child, which is to be expected because of the progression of his disease. His sensory, vocalization, and socialization skills however, are well developed with only a few exceptions as seen in the table above.
Summary of Experience with R
Working with R and the other children was a wonderful experience. It really gave me a chance to see disabled children in their everyday routine and have an insight on what goes into caring for these children. R is a sweet and precious boy that despite his disabilities is full of life. He loves being around others and interacting the best he can. He truly touches the people that he meets.
The teachers at Project Help are wonderful and really love the children they care for. The children at Project Help, as well as all disabled children, need love and compassion just like any “normal” human being does. This experience helped me to understand a little more what being a nurse can be. I can make a difference in anyone’s life no matter how big or small the task.
