One of the great things about being in touch with other families who are facing similar challenges is seeing the strength that most families bring to the challenges of having a child with MECP2 Duplication Syndrome or any of the other profoundly challenging conditions. A lot of what people talk about and a lot of what the professional literature focuses on are the sacrifices that families make, the stress that inevitably results, and generally the down side of having a child with intensive needs. Of course there is a significant amount of truth in this, but there is also another side to this equation, and right now, I want to talk about the other side.
As a researcher in educational psychology and special education for some years even before our son was born, I spent a considerable amount of time studying families of children with disabilities. We found that sometimes people tended to focus only on the negative and sometimes even see negatives that didn’t exist.
For example, many professionals believe that marriages almost always suffer and divorce rates are much higher in parents of children with severe disabilities. Looking at actual studies, however, most find no differences in divorce rates between families of children with and without disabilities, a few suggest there are mild increases in divorce rates in families with children with disabilities and a few report LOWER divorce rates in these families. Furthermore, in one study that we did, 26% of parents said having a child with a disability said this put a strain on their marriage but 52% said it strengthened their marriage and the remainder said it had no effect.
Many families also reported other positive changes in their lives. Almost all families (more than 95%) voiced strong agreement for the statement “having a child with a disability taught me what was really important in life.” Others felt that they experienced personal growth, made new and meaningful connections with others, and also grew spiritually and philosophically as a result of their experiences.
As a father, I have come to see these things in my own life. Of course, it would be wonderful if some miracle cure was suddenly available for our children, and there are times when being a parent seems much too hard, but there is also lot to be thankful for. I hope all of you have great holidays, and I hope sometime during the holiday season, you will all have a few moments to think about the good things and and some ways that your children enrich lives.
Happy Holidays to all of you!