Early on after Case’s diagnosis, I attended a seminar on special education law and advocacy given by Pete Wright, a specialist and interesting speaker on this area with a free website FILLED with information about these issues. He and his wife have published several helpful books and workbooks on the subject – From Emotions to Advocacy and Special Education Law. I am no paid endorser, but I think one of these seminars is quite helpful for those parents facing a lifelong involvement with the special education system.
Although special education law can be quite complex and daunting, jumping in headfirst is sometimes the best option. I would recommend a seminar in Cincinnati to our friends there, as well as numerous other seminars around the country, many of which are free because they are sponsored by local agencies or organizations.
Often, working to find the best set of services and IEP for your child is a combination of knowing your child, knowing the law, and working well with all parties. Especially involving a child with a rare, degenerative disease that is unknown to most school systems, but for which there is an emerging treatment to possibly alter the course of the disease, we have found that the IEP process has to be handled with care.