What constitutes a “special needs” child? My twins were born at 24 weeks gestation, weighing 1 lb 3 oz and 1 lb 8 oz respectfuly. I would say from the minute they were born, they were the poster children for what special needs looked like. Austin ( 1 lb 8 oz) just needed time to grow, not that his time in the NICU wasn’t stressful. Zachary ( 1 lb 3 oz), on the other hand, chose to challenge us as parents, the staff at CMH, and most importantly himself for the first year of life. Two heart surgeries, one lung surgery, one hernia surgery, and two eye surgeries were just the highlights of the rollercoaster we rode together in the starting months, alone. You want to know one of the most helpless feelings in the world as a parent? All I have to do is close my eyes and reflect on what life was like for him. The one upside, he doesn’t remember all the trauma that happened. One of the many downsides, all the scars that track across his body as constant reminders of the battles that he fought, one after the other. Try to explain each one of those to a now twelve year old…..how his body looks different than his peers. Thankfully, other things he doesn’t remember, the fact that he didn’t eat solid foods until he was 2 1/2 years old because of an aversion of anything that had texture to it from being intubated for so long. The many nights I would treck down to CMH after getting off work at midnight, just to spend time with him and his brother, putting on my brave face the whole ride down there. Finding out that he had lost his peripherial vision forever, because of the laser surgeries they had to do to keep his retnas from detatching, which devastated both myself and his dad. I made sure he received all the OTand PT I could sign him up for, in a valiant effort to keep him as close as possible to his peers, knowing there would always be significant delays. I had him enrolled at the Early Childhood Center Preschool right after he turned 3, with an IEP firmly in place. I have advocated for him throughout elementary and now, middle school to make sure his IEP was constantly updated to address concerns as soon as they presented themselves. Do I find myself overcompensating because of the guilt I still feel, to this day, that I could have done something differently to prevent them from coming as early as they did? You bet I do! I’m also extremely overprotective of them, as I KNOW what they went through. As long as I am able, nobody else will be able to hurt them again. That too, is part of the blame and guilt that I feel. One thing I learned about MYSELF, having went through all this…..what doesn’t break you will make you stronger. That is why I find myself wanting to be an advocate……a support…..for other parents who are dealing with similar issues. If you don’t go through such a trauma, firsthand, how can you really understand what it’s like to feel the way we do? Life changes in an instant, and will probably never be the same again. We have to be a force for our children, to ensure that they are getting the best care possible…..in all aspects of their lives. If we are not taking care of ourselves, emotionally, how can we expect to take care of our children? THAT is one of the most valuable lessons I learned…..that still sticks with me to this day.
Traci L. Smith
Licensed Professional Counselor & Mediator