Multiple Sclerosis is a little known disease, until you receive the diagnosis. If you were like our family when we heard that our daughter was stricken with this chronic disease, we assumed that MS would not severely alter her life. After all, Multiple Sclerosis may alter her physical capabilities, but she will be able to live a full life while learning to overcome the physical limitations now facing her.
After a few years, we were given a dose of reality to the cognitive challenges that often accompany MS. As an adult, I can only imagine that there are a wide variety of MS specialists ready to aid you on your journey, fully educated about the ramifications of your disease. Having a child with MS did not give us that base of knowledge, especially when it came to her education.
When our daughter was diagnosed at 10 years old in 1999, it was not even believed that children get MS. This led to a school system which had no idea what to expect of our daughter and her capabilities, or lack thereof. We were very lucky to have a school system that was cooperative in assisting us, but since we were in the dark about cognitive difficulties being caused by MS, it was like the blind leading the blind. I think back to times when the school staff tried to get her to act like other students her age, not knowing the MS would cause her to “have no filter” and she would not be able to easily alter her behavior. It was about 3 years into our journey that she had her first Neuro-psych exam and we and the school realized she was no longer a main stream student. She was able to receive all special needs services as her cognitive abilities declined as she grew older, thanks to a school system who fought for her instead of thinking we were enabling her.
We know of many kids today that have been diagnosed with MS that are in constant battles with their school systems. Neuro psychological exams have helped, but it is a work in progress for schools to realize the impact MS has on a child’s educational needs.