Donning the title of “Special Needs Parent” inevitably means there will be questions from family, friends, neighbors, educators, and complete strangers; questions that you never imagined encountering. Although frequently good-intentioned and largely benign, these 3 questions completely stopped me in my tracks, and could send me reeling for hours. After reflecting upon these questions and my reactions to them, I can safely say I face them with ease; time and perspective really were my friends here.
1. “Do they know what causes it?”
Nothing killed me more than this question. Concerned, well-meaning friends and family members would ask this at some point during our conversation when I broke the news of my son’s diagnosis. This question just, hurt. It wasn’t meant to hurt. When something happens, people want to know why. I think that by asking what caused his affliction, there is an implication that there was something that could have prevented it. Clearly, every disease/disorder process has a root etiology, whether it is known or unknown. In the case of seizure disorder, certain types can be traced to a very specific part of the brain, and epilepsy itself is typically a result of some type of neurological “misfire” in the brain. Now, the “cause” or, “why” this occurs is slightly less understood. I think this question may come from a place of fear (if there is a known “cause” that can be ruled out from their life, their child is safe) or genuine curiosity. At this point, I’ve come to understand that my own feelings of hurt and confusion were projected upon the people asking me this question. Deep down, I wish there was something I could have done to prevent my son’s disorder. I realize now how flawed and fruitless that type of thinking was, but at the time, this question essentially opened up a wound for me.
2. “Is there a cure?”
Given question 1, question 2 seems to flow quite naturally. But as a child of a special needs parent knows, there is rarely a “cure.” If there was, we wouldn’t be a special needs parent. Typically, we are provided with some array of treatment options. In our case, our son needed medication to treat his seizures, and we were extremely lucky in finding a medication that completely controlled seizure activity. While we realize how fortunate we are, seizure medication can come with a whole host of side effects. Drowsiness, changes in appetite, slower processing, and mood changes are issues my family deals with on daily basis. While my son looks “fine,” he is working harder to remain awake and alert than other children his age. When I try to imagine how that feels, I feel agitated just thinking about it. So many of our loved ones were relieved to hear our son wasn’t having seizures anymore (as were we, of course), but that wasn’t the only battle my son had to face, and I found that many just did not understand, or truly consider that factor. So, although medication is a great treatment option, it wasn’t a “cure.”
3. “Will he get better?”
There are many variations of this question (e.g., “Will he always have seizures?”). Generally speaking, each of these questions sort of leads into the next one. This particular type of question never bothered me, but I found it tricky to answer. I found myself rambling on and on, and stumbling over my words. I finally found my “go to” answer, which is typically along the lines of: “His neurologist told us that approximately 70% of children with this type of epilepsy outgrow it, so we are optimistic.” Our son has also been diagnosed with ADHD most recently, and definitely has a greater chance of being something that may have to be managed throughout his lifespan.
Each one of these questions has been part of our innermost thoughts. But when someone else is the one asking, it makes everything more real. In the midst of a diagnosis, we are feeling vulnerable, confused, drained, shattered- the list goes on. Among all of these emotions, the last thing we want to feel is judged.