Stacy from The Preemie Experiment poses an important question in the post How Much Do You Tell? for parents of preemies. We have all been in those situations where someone asks "How old are they?" or "Why do they need that?" in reference to various medical equipment. Then there are the harder questions like, "Why can't they focus?" or "Oh, will they ever be normal?".
As a parent of a micropreemie who is doing well for a 25 weeker and a 30 weeker with ADHD and sensory issues, I often am caught trying to find the *right* answer. Often it depends on the person asking, as many of Stacy's commenters will write. Doctors and therapists get the whole, fought-my-butt-off-to-be-here truth. Caregivers get all the important information. Friends somewhere in between. And strangers, a wide variety. I find that my medication background and nursing degree sometimes hurt me in this area because I am much more likely to give the TMI or Too Much Information reply. My brain is wired to medical knowledge.......I forget that not everyone else is set to that mode. This doesn't dismiss the fact that these questions do get asked and will continue to need answered for many years to come for both Carson and Elias. The goal is to get the answers down to a science.
One of the commenters, Chris wrote: "When a parent faces off with this question, s/he may learn that they are still quite traumatized by their child's disabilities. I think this is often evident in the need to spill one's guts, to retell the story, giving colorful detail. To me this means that we aren't over it. And I think some listeners say "Whoa!" meaning TMI (too much information)."
Stacy responded with this, "After reading what Chris had written, I started to think about the times when I've given strangers the full version of Paige's birth story. I've come to the conclusion that Chris is correct. There have been times when I have told the story because I was truly not over it. There are days when that is still true.
The other side of the coin is I feel the need to tell people about Paige's prematurity in hopes they will understand (and sympathize) why Paige is so socially different. When she acts inappropriately, I feel the need to make people understand the reason behind it. I think it's especially hard because Paige appears normal because of her large vocabulary. So, when she acts odd compared to her peers, I am brought back to reality."
Stacy echos my thoughts so closely when trying to determine how to respond to questions about Carson's behavior. I think the behavior aspects of long-term prematurity impact are often times judged more and questioned verbally less than the more visually obvious physical impairments. This often causes parents of preemies with social and behavioral disabilities to jump the gun a bit explaining their child's actions. I find myself doing it in public with Carson and then looking back and questioning why I felt the need to tell the lady at the park why. His amazing vocabulary and advanced speech in addition to being the height of a six-year-old make people think Carson is much older than his four years.
So, what is the correct answer? Stacy's reply fits how I often feel, but is that the best for all involved? I can't answer that right now but it was comforting to find another parent with the same emotions and thought process involved. Thanks Stacy.