Christina was 36 years old when her sixth child was born. Her newborn daughter was different from the any of the others, and as time passed Christina began to realize that her new baby had a severe disability. Caring for this daughter would require Christina to change her life drastically, and those changes would dominate Christina’s life as long as her severely disabled daughter survived.
Not long after Darwin’s theory of evolution began to gain widespread acceptance, the notions like “survival of the fittest” and “the law of the jungle” popularized the idea that ruthless competition determined progress. This was based partly on a simplistic misunderstanding of evolution and partly on wishful thinking of powerful people who wanted to justify their own good fortune. Of course, it is true that competition within and among species is important, but much more recently science has recognized the roles of cooperation and caregiving as being equally if not more important to survival.
Of course, it seems unlikely that that Christina knew anything about evolutionary theory. She simply responded to her daughter’s needs. An older daughter pitched in and helped Christina at times. Nevertheless, most of the caregiving remained with the mother’s job. Christina didn’t let others who were not family members share caregiving responsibilities. She carried her daughter wherever she went, and did the best she could as long as her child survived.
When I read Christina’s story, I thought it sounded she sounded a lot like other parents of kids with severe disabilities that I have known. What was different was where Christina’s story was published; it was in the journal Primates. Christina is wild chimpanzee living in the jungle in Tanzania.This Wall Street Journal YouTube video provides a glimpse of Christina’s life with her daughter. Although this appears to be the first published study of caregiving for a severely disabled infant by chimpanzee, Christina’s caregiving behavior is not unique and it is not exclusive to primates. Caring for a disabled individual has been observed among a wide variety of animals. For example, his story of a pack of Orca’s provides an interesting example of “Killer whales” caring for a disabled pod member by bringing him food because his disability makes it impossible to get his own food.
There is also paleontological evidence of the earliest humans and prehumans caring for severely disabled children; some dating back 100,000 years or more. There are a number of examples of skeletal remains of children adolescents with evidence of significant disabilities have demonstrated that families (and most likely communities) cared for children and adolescents with severe disabilities during the paleolithic era. The skull and spines of these individuals reveal that they lived for many years with disabilities that would have been much too severe for them to survive without the help of caregivers.
In spite of all conflict, violence, and all of our human failings, humans have become the most successful species on this planet precisely because of our powerful will to care for each other. Families and communities caring for children and adults with severe disabilities exemplify this essential human quality.
Brothers and sisters growing up with sibling with severe and multiple disabilities often are required to make sacrifices that most other children do not have to make. Parents often feel guilty about neglecting their other children when they are overwhelmed with the urgent demands of a child with ongoing urgent needs.
Before going on with this discussion, I need to issue a disclaimer and apology. Writing about this topic, it is tempting to present it like I have it all figured out, like everything is and always was under control, and like I always handled things perfectly. Unfortunately, that is not the case, and I am sorry for those times that I fell short as a dad. Nevertheless, I do think there are a some thoughts that are worth sharing, and I am passing them along for what they are worth.
At times. it is hard on siblings growing up with a brother or sister with intensive needs. It is also difficult for parents who want to be fair to all their children, when one has needs that are so much more frequent and urgent than the other. Continue reading
Winter 2015-2016 has been heartbreaking for families affected by MECP2 Duplication Syndrome all around the Northern hemisphere. So many of our affected family members have been seriously ill, in critical care, and sadly some have not survived. It has been crushing for families directly affected, and even those not directly affected feel some of that pain. It has been hard to keep the light of hope burning for many of us.
As the father of one of the lucky ones, who have so far made it through this winter untouched, I feel empathy for the many families who are suffering now— but I also feel guilty about our family’s good fortune and feel afraid that our luck will change. It is really hard to know what to say to the families that are hurting so badly right now. No words seem adequate. As difficult as it may be at times, we need to hold on to hope, no matter what comes. Continue reading
The MECP2 Duplication Syndrome Family Talk Facebook Group
This is a private Facebook group that links approximately 750 individuals from families affected by MECP2 Duplication Syndrome from around the world. Some members of the group are regular Facebook users while others become Facebook members solely to access the family talk group. Group members share practical information and social support.
Parents, Grandparents, Siblings, and other relatives of children or adults with MECP2 Duplication Syndrome are welcome to join the group. Since family can be loosely defined, parents and guardians can choose to extend memberships to friends, caregivers, or others who they consider to be part of their families. Decisions about these “extended family members” are up to the parents or guardians of the individual with the syndrome.
Researchers or professionals in health, education, or other disciplines who are working in this field may request membership. These requests will be discussed among group members via the Facebook group, and approved only if their is strong support for confirming membership.
To join the group, you need to follow these steps: Continue reading
Great new video highlights the kids with MECP2 Duplication Syndrome and their families.
This great video was released on Christmas Day 2015. Thanks to Joe Mendoza and his colleagues for another great video… and of course, thanks to all the families who participated.
Today, I was reminded of something that I wrote 20 years ago back in 1995. I want to share it again with parents of kids with disabilities and with professionals who work with families. I found this quote from me on someone else’s website, I am glad that someone was kind enough to preserve it:
Sometimes it is more important to be a parent than a paraprofessional. Parents are expected to be physical therapists, nurses, behavior modifiers, communication therapists and so on. Sometimes paid professionals tell us, “you don’t need us; you know how to do all this stuff.” Sometimes we have to tell them, “I’m sorry but we’re too busy being parents to do all these other jobs.”
The unique role of parents must be recognized, respected, and cultivated. Parents need to be parents first, and being good parents is the most important job in the world… -Dick Sobsey
Here is the point that I was trying to make… Continue reading
Back in 2000, my colleague Kate Scorgie and I published some research on how having a child with significant disabilities changed the lives of parents in some positive ways. A lot had already been written about the stress, sorrow, and other negative aspects of parenting a child with a disability, but we felt there were also some very positive parts of the experience that needed to be acknowledged. We found that children with disabilities transformed their parents’ lives in some positive ways.
Since then there has been a lot of discussion and analysis of this process of transformation. Some have suggested that these positive changes in parents lives are not real, but a rationalization to cope with the negative aspects of the experience. This month, some of my colleagues and I published a study that attempts to test whether the beneficial aspects are real or not, and the results confirm the benefits reported 14 years earlier. The results are summarized below: Continue reading
This 5-minuted video from Joseph Mendoza does a superb job of telling the story of children and adults with MECP2 Duplication Syndrome and their families.
Thank you to all the families of individuals with MECP2 Duplication Syndrome that have made the effort to communicate with and support other families.
Thank you to all the families of individuals with MECP2 Duplication Syndrome that have worked so diligently to spread public and professional awareness of the syndrome. Continue reading
This compilation of home videos illustrates one individual with MECP2 Duplication Syndrome and his walking at various ages over a period of two decades. It indicates his progression and regression of skills. Of course, every individual with MECP2 Duplication Syndrome is different, many will never walk and some will begin walking younger, develop even more advanced skills, and maintain them longer. We are sad to see some of Dave’s skills slipping away but grateful for what he was able to achieve and what he still can do. I think Dave’s walking, however, is fairly typical for those who do develop walking.