Since becoming a preemie parent, I think all of us have heard plenty of insensitive, ignorant or downright rude comments from people. The latest for me was when someone asked me, “so, what does he have?” after learning my 2 ½ year old is not walking yet. I am at the point where I think we all should start a blog called “The Stuff People Say,” except I would insist we substitute the word “stuff” with a certain expletive. Even though I have already made peace with the fact that my preemie has not caught up developmentally yet, it still bothers me when people say such things and once again I have to explain about his premature birth. I don’t know about you, but I am so tired of explaining!
In the beginning, it never bothered me. In fact, I was eager to tell people my son was born 11-weeks early because I was so in awe of all of our preemie’s incredible stories of survival. While my awe has done nothing but increase exponentially over time, my patience with other people is waning. It seems that now everyone either expects my son to be caught up or they just don’t understand how complex a preemie’s development is.
This is especially true with some of my son’s developmental specialists. We recently had him evaluated again for his gross-motor delay but this time by a top-ranked children’s hospital. They informed us they do not correct for age after a preemie’s second birthday. It is important to note that there is no consensus among professionals regarding correcting a child’s age for prematurity. Some don’t do it at all. Some correct into school age. However, most correct through two years.
Furthermore, there is current thought that the amount of time your preemie needs to catch up is directly related to how many weeks he was premature. This newer formula takes the number of weeks your preemie was born early and multiplies it by 10 to give the number of weeks needed to correct for prematurity. Since my son was born 11 weeks early, we would correct for 110 weeks, or about 2 years and 2 months. As he approached that time frame, it would be expected that his developmental skills would be comparable to children of the same age, no longer accounting for prematurity. Regardless of what formula is used, he still has not caught up.
But, do you want to hear something truly awesome? At this most recent evaluation, in addition to his gross-motor delay, they also gave my 2 ½ year old a cognitive functioning score of 15-months. That was not so awesome. Then, a few weeks later, I was reading an alphabet book to him and he identified and said every single letter. He knows the alphabet already! You can show him letters in any order, and he knows them. Kindergarten here we come! Seriously, though, don’t let these standardized tests get you down if your preemie has not scored well. Every child is so unique, and amazing. Don’t let some test make you doubt that!
So, according to most developmental specialists, I should not be adjusting my preemie’s age anymore. Honestly, I have not done so since he started daycare last year and I had to write a letter giving permission for my then 18-month old to be cared for in the “infant” room until he was strong enough to be with the toddlers. But, what I will continue to do until who knows when is I will still take into account his prematurity. I strongly believe that while we preemie parents stop adjusting our preemie’s ages officially at some point, we will never forget how far our preemies have come and what they had to endure to be here. We owe them that and I take back what I said about being tired of explaining my son’s prematurity. His story, and your preemie’s story, needs to be told.