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Down Syndrome and Sources of Uncertainty for Families

While initially, the diagnosis of Down syndrome for a child brings fear and uncertainty to the family, eventually the parents report that the positives of raising a child with Down syndrome far outweigh the negatives. As a family works through their Down syndrome diagnosis they have some initial sources of uncertainty that need to be worked through and then there are ongoing sources of uncertainty.

The initial diagnosis of Down syndrome is typically unexpected and a great source of fear and confusion for the parents. Regardless of whether the parent finds out during pregnancy or after the baby is born, they have to take the time to grieve the loss of the dreams they had for their baby as they come to understand that life will be different. Parents are also concerned about the things in the future that are normally taken for granted. Medical care, education, and the need for early intervention are all things that have to be confronted early on. As new parents of a Down syndrome child, there is a lot of uncertainty and fear of doing a good job. Parents who can surround themselves with a good support network have a better chance of working through their concerns. Many parents are notified of their Down syndrome child in a cold, medical atmosphere with outdated information while others are informed in a caring and sensitive manner. Those in the latter group typically have less uncertainty and fear of the future than those in the first group. The parents in the latter group have an easier time moving forward with their child and looking toward the future.

Once the initial shock of having a child with Down syndrome is over, there are other uncertainties and fears that are ongoing and provide more of a constant issue for the parents. The child's education is a source of uncertainty for the sheer fact that there are so many questions. What schools, programs to choose, teachers, classes are all things that also have a tendency to change on a regular basis so as the parents work through one aspect of education, another aspect will change and cause more concern. Another source of ongoing concern has to do with the fact that people with Down syndrome have a longer life span. Parents have a responsibility to care for their children further into adulthood and possibly even after they have already died. Along with the longer health span, the parents have to consider the health care of their child not only throughout their childhood but also throughout their adulthood. The health care of children in every family is an ongoing concern but in a family with a Down syndrome child, the concern is even greater.

It is important for families with a Down syndrome child to be able to thrive and be resilient in the face of uncertainty. The first step toward safety is to be sure to grieve the loss of the child and the dream that they had for their lives. Secondly, the parents need to look past the problems and troubles in their family and recognize their strengths and that because of the Down syndrome they are a stronger family. A third key to thriving is to not be afraid to ask for help when needed. There are always people that love to help and are just waiting to be asked. Sometimes families just need someone to help them out by giving them a break or some assistance. Lastly, thriving as a family unit has more to do with everyone working to be the best they can be and not what anyone else wants them to be. Parents of a Down syndrome child should encourage their child to be the best he or she can be at everything he or she does and not to worry about what other people tell them they need to be.