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This is Janis Ryan San Carlos, CA USA
Katie, born 4/13/93 was clinically diagnosed with NS when she was 41/2 years old. We were pleased to know that the "problems" Katie was having; motor development and visual (primarily) were related to NS - at least we knew and could then deal with the associated conditions. Katie's main issues have been with school. First we had to convince the parochial (Catholic) school to accept her as a child with special needs and would require accommodations - they had never had a child like her. Once in, we have had to constantly remind them about her accommodations, develop an IEP and routinely educate the teachers and personnel regarding NS. She is now in 8th grade and receiving less accommodations due to continued development (slow and steady). She has totally impressed the school administration and teachers with her "stick to it" attitude and perseverance. She meets the challenges posed to her by a very rigorous academic schedule, making decent grades and doing all of the work (nothing is reduced). Her biggest problems to date are social issues in school. She has not been accepted into the large group of kids in the class, but does have a few friends who she hangs out with. It has been a very tough middle school experience with teasing, harassment and actual physical attacks (balls thrown at her). To deal with these issues has been the hardest part of living with NS. However, we keep on going. Recently I (her mom) created a power point presentation ion that I required the teachers to review before our annual planning meeting. It really helped them understand Katie's issues, even though her school file is comprised of every conceivable piece of literature on NS. I shared the power point with the parents and the teacher/principal showed the class. We have done this as a means to educate Katie's peers and their parents about NS. Hopefully, they will have a better understanding and reduce the bullying incidents. While all of this is going on... we are getting ready for genetic testing, finally and revisiting specialists (Cardiac, Hematology and Neuro) per the recommendations of Dr. Amy Roberts. Katie was diagnosed in Oct. 2007 with mitral valve prolapse. If anything, we know that kids with NS do take time to develop and a lot of patience is required for that! We also know that there are other "surprises" that may not be too pleasant waiting for Katie/us as she gets older. NS is an ever evolving process, both good, bad and always a learning experience. We actually feel fortunate to have this opportunity in dealing with differences ... it has made us all grow. |