Development Issues

Will my brother, who has mild CdLS, be able to grow up like a boy without CdLS?

Each individual with CdLS is different and, as with any child, it is difficult to predict what his life will be like when he grows up. However, there are probably some generalizations that are safe to make. Since your brother is mildly affected with CdLS, he will certainly continue to make some advances in his physical, emotional, and developmental growth in the upcoming years. Like other boys, he will go through the typical changes associated with puberty. As he matures, your family will probably strive to have him become more independent in activities of daily living, such as bathing, hygiene, dressing, picking up after himself, helping out with chores, etc. Some of these he may learn easily, while others may require more assistance from family and take longer to master. In some individuals with CdLS, there may be tasks that are beyond their ability to learn and, therefore, always be areas that require outside help to complete.

Depending on his level of functioning, he will probably always require a certain level of supervision at home and in the community to insure his safety. This most likely means that as he becomes an adult he will probably continue to live with family or move on to some type of supervised living arrangement depending on your family’s wishes and his needs.

One area that most individuals with CdLS struggle with is socialization and friendships. While some are fortunate to find friends among their peers, others never seem to find their niche. This seems to be especially the case with the more mildly affected persons who don’t quite fit in with either their developmentally delayed peers or with their non-affected peers. Most families find that the individual with CdLS will require much assistance in connecting with others and making friends. Families find that they are often the main source of meeting the individual’s socialization needs, but this is very important for self-esteem.

BC/TK 7-13-10