First, there is the emotional response to realizing that instead of your child being able to learn or gain skills like other children, even those children with special needs, he or she struggles to even hold onto skills and will eventually lose them. Second, as almost an insult to injury, there are often battles with the school system over what is an appropriate education in a circumstance such as this.
Of course, what we’d all like to say is, “Don’t you realize how difficult it is to accept that your child has a progressive and degenerative disease? Can’t you simply help my child in the way that I ask for, me being the expert on this condition here, to make their life as meaningful and enjoyable as possible?” We would like not to have to battle for things with doctors, schools, and others. But sometimes, battle we must.
I recently spoke on IEPs (individualized education programs) at the National MPS Society’s annual family conference in Boston, Massachusetts. One of the points I wanted to drive home was the specific support for treating degenerative diseases uniquely in the IEP process.
Specifically, during the re-authorization of the IEP legislation in 2004, the Individuals with Disabilities Education Act or IDEA, the commentary to the final regulations specifically included language about degenerative diseases. In fact, my understanding is that the National MPS Society, along with NORD and other groups, advocated for this language.
There are dual advantages to this argument. First, you can ask for unique goals and services – your child is likely not like any other child in their system. You might even ask them whether they’ve ever had a child with a progressive, degenerative disease before. It does require a unique perspective on their educational experience. Second, this offers the school some defensibility to others, whether it be their superiors or other parents, as to why your child might receive more, different, or unique services.
Here is a link to download the language regarding degenerative conditions, specifically highlighted. The biggest circumstances in which I’ve found that this language might be helpful are:
In addition, here are some additional resources to add to your IEP toolkit that might be helpful: