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     The Jordans have been married 5 years and live in a moderately affluent development on the outskirts of a metropolitan area. Robert, age 35, is a lawyer with a growing firm. He has worked for the firm for 2½ years and has established himself as a competent attorney with the potential to become a partner in the future. Ellen is 31 and has a master's degree in English. She is employed part-time in a local bookstore and is also very active in a variety of civic organizations. The Jordans have a 10-month-old son, Wilson.

      Ellen's pregnancy went full-term and was uncomplicated. Down syndrome was detected at birth, and Wilson remained in the hospital 3 additional days for further testing. During this time, a heart defect was identified. It was, however, considered to be mild and not expected to require surgery for at least 3 years. Ear infections have been a continual problem. As a result, tubes were inserted a month ago in the hope that they will provide some relief and curtail any possibility of permanent hearing loss. In addition to his recent outpatient surgery for tube insertion, Wilson was hospitalized one other time for pneumonia when he was 5 months old. Wilson's developmental progress has been quite promising for a child with Down syndrome. Now, at 10 months, he is babbling, banging and throwing objects, imitating some simple gestures, sitting independently, and on the verge of crawling.
 

In Pursuit of Information and Services

     Not unexpectedly, Wilson's parents' initial reactions to his diagnosis were shock and grief. These feelings seemed to be more sustained for Robert than for Ellen. In fact, for a time, Ellen feared that Robert's "depression" was seriously affecting his work and threatening his chances at eventual partnership in the firm. Within a few weeks of Wilson's birth, Ellen appeared to push her grief aside and "take the bull by the horns." With a flurry of telephone calls, she soon knew of nearly every local resource for Down syndrome and began seeking information and resources nationwide. Frequent trips to the university library have resulted in the accumulation of a massive amount of information about Down syndrome.

      The family has received weekly home visits from an early intervention program since Wilson's birth. They were also invited to parent-child groups that meet twice a month. The Jordans have opted not to participate in these groups because of Wilson's susceptibility to colds and subsequent ear infections. In addition to home based services, the Jordans have arranged for a number of other therapies for Wilson. When Wilson was 4 months old, Ellen was concerned that he was not rolling over yet and felt that additional physical therapy was needed. She contracted with a private therapist for additional weekly sessions. Since then, private physical therapy has been increased to twice a week. When Wilson was 8 months old, the Jordans added private speech-language therapy to his agenda. Wilson also participates in a megavitamin therapy program offered by a university clinic. This necessitates a 200-mile excursion once a month.

      Visits to the Jordan's home have always been rather business-like. Ellen has the living room carefully arranged, complete with selected toys, bolsters, and other educational materials. She also has a written set of questions, topics, or concerns she wants to address during the visit. Wilson is always freshly bathed and dressed in a smart outfit. Ellen usually offers information as to how rested he is, if he has been feeling well, whether he is on any medications, and when and what he last ate. This is followed by Ellen's appraisal of how ready he is to perform that day.
 

Parental Concerns Escalate

       During the last several weeks, Ellen has made several new requests for information. Ellen has been talking about what children and adults with Down syndrome look like and how their appearances stigmatize them. She is worried that Wilson will automatically be viewed by others as having mental retardation because of his facial characteristics. She also expressed concern over his becoming overweight as it may result in his not being socially accepted by his peers. Ellen has read about cosmetic surgery for people with Down syndrome and says that she has decided she wants this done as soon as possible. She requested the names and addresses of surgeons who have been involved in this work. Ellen also requested information on weight control for children with Down syndrome and would like the names of good nutritionists in the area. She plans to prevent Wilson from having weight problems by starting diet control early. Finally, Ellen has read about the early use of computers to enhance the language and literacy skills of children with Down syndrome and wants more information so she can get Wilson started with this, too.

      During the most recent home visit, Ellen asked the early interventionist if it would be possible to come twice a week instead of once a week. If not, would it be possible to arrange additional home visits on a private basis? The staff member asked Ellen why she felt this was needed. Ellen said that she was concerned Wilson would "fall behind" without concerted effort on his developmental skills. Because she worked part-time at the bookstore, she did not feel that she worked with Wilson enough. She had an in-home babysitter whom she trusted to care for Wilson, but she did not feel the sitter could provide the level of expertise needed to keep Wilson "on target." Ellen said she did not wish to quit her new job, but wanted someone to provide training for Wilson while she was at work. Already, the physical therapist and speech-language therapist are scheduled to come 1 day a week while she is at work.
 

A Concerned Professional Seeks Team Support

      The early interventionist who regularly visits the Jordans has become increasingly concerned about the family and has come to team members for their advice. First, there is concern that the parents may be pushing Wilson too much.

      "Although Wilson gets a lot of adult interaction," says the home visitor, "very little of this time is spent just playing. Instead, everything is viewed from the perspective of Wilson learning specific skills." Ellen's persistent concern over Wilson's developmental progress, coupled with her new concerns over cosmetic surgery and diet, are cause for the home visitor to question whether Ellen is really accepting Wilson's condition.

      The early interventionist is concerned about Ellen's emotional well-being. Ellen is extremely well-organized and very cool and business-like regarding Wilson's intervention program. She shows very little emotion in discussing her concerns about Wilson or expressing her own needs. Instead, she states all needs in a matter-of-fact manner and takes immediate action. "The woman never stops to take a breath," says the home visitor. "Her day is tightly scheduled down to the last minute, and she organizes everyone else's schedule as well. I find myself trembling a bit if I'm 5 minutes late for a home visit and she promptly ushers me to the door at the end of our scheduled time."

      In response to the blank expressions on the faces of the other team members, the interventionist continues, "Now, don't get me wrong, she's very courteous and even quite humorous at times. It's just.well, I get the feeling that she's a driven woman. I don't know how long anyone can keep up the pace she has set for herself. It wears me out just to be around her!"

      The interventionist is further concerned that Ellen may not be getting the level of emotional support that she needs. "I've asked Ellen about Robert's opinion several times," the interventionist tells the team, "but Ellen just says that he agrees with her. From what I can gather, she's taken over the whole show-probably more to protect him than anything else. Whatever the reason, Robert seems to be under a lot of stress at work and puts in a lot of extra time at the office."

      The interventionist went on to say that parent-to-parent support has been mentioned to Ellen on several occasions, but Ellen appears to want nothing to do with it. Ellen says she's too busy, that she thinks Wilson is coming down with a cold, or she simply says, "No, thank you."
 

This story originally appeared in McWilliam, P.J., & Bailey, D., (Eds.). Working Together with Children & Families, Case Studies in Early Intervention. (1993). Baltimore: Paul H. Brookes Publishing Co.

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