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
GEMSS: Genetics Educational Materials for School Success is a website that provides educational materials for school personnel to support the inclusion of students with genetic syndromes in the classroom. They have recently added a useful section on MECP2 duplication syndrome.
The site also includes a sections on many other genetic conditions, such as Rett syndrome and Angelman syndrome.
Regardless of the school placement of your child, this can be very helpful information to share with your child’s school.
There has been a great deal of concern about “the removal of Rett syndrome” from the DSM-V. For those who aren’t familiar with the DSM, it is the Diagnostic and Statistical Manual of the American Psychiatric Association. Here is the issue: The DSM-IV had a category called Autism Spectrum Disorder. It included Autism and a few other things that were not exactly autism, but shared some features of autism. Included in the Autism Spectrum Disorder was Rett Syndrome. So it defined Rett syndrome as part of the spectrum but different from AUTISM itself. The new definition makes no mention of Rett syndrome and many people interpret that as saying that Rett syndrome has been taken out of the DSM. Continue reading
19 April 2012 A pilot study from Montefiore Medical Center reported in this month’s Pediatric Neurology looks at social and communicative behaviour in girls with Rett Syndrome. Early results suggest that girls with Rett syndrome may have better social and communicative skills than what is often assumed, and that they differ from many other individuals with autism because they show greater interest in social stimuli.
This study should be interesting to families of children and adults with MECP2 duplication syndrome and others interested in the syndrome for a couple of reasons. First, like Rett syndrome, MECP2 duplication syndrome has been grouped in the family of disorders that produce symptoms of autism, and many individuals with MECP2 duplication syndrome have been given an autism diagnosis. Second, many parents of children or adults with MECP2 duplication syndrome report similar findings to those now being documented in Rett syndrome. Parents typically report that they believe their children with MECP2 duplication syndrome understand much more than they can communicate to others and that they are interested in other people. Finally, this is an example of another area of research that it would be great to see with our boys and girls. So far research into MECP2 duplication syndrome has been largely genetic and medical, and this is badly needed. Nevertheless, our boys and girls also can benefit from social, psychological, and educational research that can help to give them better lives.