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Case in Progress

Jonathan at 1

This is the story of Jonathan. Jonathan is a beautiful little boy with a diagnosis of Down Syndrome. The following is his growth and development from the ages of one to two years. If you would like to learn more about Down Syndrome reference books are listed at the end of this article.

New goals and objectives were established in January at Jonathan’s first birthday. His parents expressed the desire for him to crawl so it was time to focus on getting him moving. The gross motor objectives were to get Jonathan to sit independently for longer periods of time, and able to sit with his legs to the side (side-sit) and then into a crawl position. In gross motor development, the child learns to move his body by using his large muscles, including legs, arms, and abdomen. Movement allows the child to explore the world and lays the foundation for growth in other areas of development.

Often for children with low-tone, movement is difficult in the beginning. They must work harder to move against gravity. It requires consistent and patient repetition. Another possible concern is arm weakness. Improving arm strength cam be addressed by longer and longer periods of time on the tummy. Improving arm strength is very important as a precursor to crawling, and other fine motor activities. Fine motor development involves control in the small and detailed movements of the fingers and hands.

In the winter after Jonathan’s first birthday, he came down pneumonia and had to be hospitalized. When he was released from the hospital, his breathing was treated at home with a breathing apparatus called a nebulizer. A nebulizer gently directs a medicated steam directly into the baby’s face, allowing the baby to inhale the vapor of the medication. Having the nebulizer allowed Jonathan to be at home and still receive the needed medication. The nebulizer allowed him to breathe much easier and he recovered quickly.

Therapy resumed to address Jonathan’s development. As the milestones and skills got more difficult for him, it was noticed than Jonathan would look to his parents to "rescue him". He was easily distracted and appeared to have low stamina for physical tasks. This was probably due to his low muscle tone, but in some children with Down Syndrome could be due to a heart problem. Improving stamina requires a general fitness program where Jonathan would have daily opportunities to use his muscles.

The parents and team agreed that he was better able to attend during therapy if his parents were not in the room for the entire therapy session. The routine was established where his parents were present at the beginning and then again at the end of each session. It is very important for the continuity of his growth that Jonathan knew that his parents thought his therapy was important. It was equally important that the therapist have time each session with the family to teach new skills, answer questions and address any of the concerns they might have. Parents are a child’s first and best teacher!

The following April, Jonathan had his first assessment with a Speech and Language Pathologist. At the age of 15 months, he appeared to understand language at the 16 month level, receptive language, and vocalize at the 12 month level, expressive language. Receptive language includes listening, following directions, and comprehension of words. Expressive language is speaking, vocalizing, or communicating by sign language. A receptive skills usually precedes the ability to express that word.

In May Jonathan was again assessed at the age of 18 months. It was apparent that he had made quite a bit of progress over the past 6 months. He had met all of his previous goals and objectives - including sitting alone for 5 minutes; going from sitting to his tummy on the floor; and standing at the couch for 5 seconds. Jonathan had become very social in the past few month and in the area of fine motor he was now able to place blocks into a container.

Based on his gains in the previous six months, new goals were set for the next six months. Goals included crawling with his tummy on the floor, pulling himself to stand at the couch, and building a tower of two blocks. Jonathan would continue to receive physical therapy weekly, child development, language development and parent education to work on his goals and objectives.

In November Jonathan’s overall skills were again assessed. At his present age of 21.5 months, Jonathan’s developmental skills ranged from 24 weeks to 13 months. Jonathan had achieved each of the gross motor goals set in May, but had not his fine motor goals. Often when a child is making great gains in one area, particularly in the areas of crawling and walking independently, it is common for other skills not to make equivalent gains. This was the case for Jonathan in his fine motor skills. Goals were set to focus on fine motor skills - including removing a large peg from a board and placing a puzzle piece. At this time a goal was also set for Jonathan to feed himself three bites of food from a spoon independently.

Self help skills are the ability to take care of oneself, and is an important area of development. At birth, babies are totally dependent for all their needs. As children grow, skills such as feeding, dressing, hygiene, and toileting allow for increased independence.

Feeding is a particularly important self care skill and is often problematic for children with Down Syndrome. Some children are particularly sensitive to differing textures, making the progression of solid foods difficult. Experimenting with different sizes and shapes of spoons may also improve his ability to tolerate spoon feeding. Since the face and mouth are controlled by muscles, Jonathan’s low tone also hindered the quick acquisition of self feeding skills.

By November of 1997 Jonathan had been receiving speech and language services for seven months, and he had improved in his ability to verbalize. Jonathan could name some objects such as ball and block, imitate the sound of a train while playing with one, and use a question inflection. Jonathan’s attention span and focus was beginning to improve and in November his language skills were 16 months receptively and 20 months expressively.

At this point in his development, a great deal of receptive language depended on his ability to point at an object that was named, and he had not yet obtained this skill consistently. The previous language goals that were set with his parents were continued. In particular, family members were to point at and name each object in his surroundings, and verbalize each action that is being performed. (For example, "Here’s your diaper. Now we’re going to change your diaper.") Reading books to and naming each item in the book were another avenue of increasing language.

At the time of the November assessment it was noted that Jonathan had been evaluated for scoliosis, but it was not in evidence and no follow up recommendations made. Jonathan had also been prescribed bifocal glasses for his myopia. The family found it was difficult to teach him to leave them on, and they were encouraged to provide a routine schedule for his wearing his glasses. It was also noted that Jonathan had developed the behavior of throwing objects, which was interfering with his progress. It was decided that during his third year with Pediatric Services that a Parent Education and Behavior therapist would begin visiting Jonathan and his family to work on his throwing behaviors and focusing his attention so that he could optimize his progress. It was agreed that continued physical therapy and language services were also necessary for Jonathan.

Jonathan’s mother had researched and found several vitamin therapies for children with Down syndrome that she began utilizing with Jonathan. She felt they were beneficial to his overall growth and development, and she was quite pleased with his progress and health.

Each parent’s goal is to maximize strengths and minimize weakness so that your child can reach his fullest potential. Studies show that babies with Down Syndrome can develop quite well. Research shows that participation in an early intervention program develop skills much faster than those who do not. The following chart show developmental milestones and their average age acquisition.

Children with Down Syndrome

Normal Children

Average
Range
Average
Range

Smiling

2 months 1-4 months 1 month -3 months

Rolling over

8 months 4-22 months 5 months 2-10 months

Sitting alone

10 months 6-28 months 7 months 5-9 months

Crawling

12 months 7-21 months 8 months 6-11 months

Creeping

15 months 9-27 months 10 months 7-13 months

Standing

20 months 11-42 months 11 months 8-16 months

Walking

24 months 12-65 months 13 months 8-18 months

Words

16 months 9-31 months 10 months 6-14 months

Sentences

28 months 18-96 months 21 months 14-32 months

(Pueschel, 1978)

Suggested Readings

Babies with Down Syndrome- A New Parent’s Guide, Edited by Karen Stray Gundersen, Woodbine House
Keys to Parenting a Child with Down Syndrome, by Marlene Targ Brill
Teaching Your Down’s Syndrome Infant: A Guide for Parents and Professionals, by Marci J Hanson
Communication Skills in Children with Down Syndrome: A Guide for Parents, Woodbine House
The Language of Toys, Sue Schwartz, and Joan Heller Miller, Woodbine House
Child of Mine: Feeding with Love and Good Sense, Ellyn Satter, Bull Publishing Company
How to Get Your Kid to Eat....but Not Too Much, Ellyn Satter, Bull Publishing Company
Keys to Parenting a Child with Down Syndrome, by Marlene Targ Brill
The Early Intervention Dictionary: A Mutidisciplinary Guide to Terminlology, Jeanine Coleman, Woodbine House, 1993
Time to Begin: Early Education for Children with Down Syndrome, by Valentine Dmitriev, Caring Inc. 1982
In association with Amazon.com. Available now at Amazon.com.

Julie Loe

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Last modified: January 26, 2013