By Carly Mannava
2005-06 Special Needs Coordinator
As a new National Worker, I would like to introduce myself as the Special Needs Coordinator for NOMOTC and share with you some of my experiences as a mother of children with special needs. My children had a rocky start; my fraternal sons were born at 26 weeks weighing two pounds each. Being first-time parents of twins is difficult, but parents of micro-preemies face a particularly daunting challenge. My husband and I had few expectations. Our twins' healthcare professionals were knowledgeable, but as parents, we felt overwhelmed with both our little ones having issues.
One of our multiples was diagnosed with Retinopathy of Prematurity (ROP) and suffered an Intraventricular Hemorrhage, Grade 4, which resulted in a very mild case of Cerebral Palsy. Our other son also had ROP, hemangiomas, and required a double hernia surgery at seven months of age. Since the multiples qualified for a therapy program due to their extreme pre-maturity and low birthweight, they received physical and speech therapy on a weekly basis. We had frequent visits to the neurologist, pediatrician, dermatologist, retina specialist, and ophthalmologist. Our lives became a balancing act. Both children frequently had medical appointments scheduled for the same day and almost at the same time. Our priorities had to be established. I still get exhausted just thinking about those early years and the frequent physician visits.
An important organizing tool I found was medical journaling. Multiples with special needs may have different problems, and they may be seen by different doctors. Documenting each child's case is the best way to keep track of appointments and important medical details you don't want to forget. Journaling may also help each of the children's doctors stay abreast of any new medical information.
When my sons were first born, I felt I did not fit in my local mothers of twins club. At my first meeting, we were asked to introduce ourselves. Everybody was cheerful when they retold their successful birth stories. No one at the meeting had experienced what I was going through. Months later, I met a couple of women whose children had issues similar to mine. We became fast buddies and each other's support counselors as we dealt with the emotional challenges of raising multiples with special needs.
My husband and I realized organization was going to be our lifeline. Having everyone on the same schedule was a time saver. Our twins ate and napped at the same time, which gave me time for other tasks. Another way I saved time was by multi-tasking. For example, while one twin had physical therapy, I'd rearrange furniture in the babies' nursery, which served as neurological stimulation for the other twin. We found it important to have a support network. We did not hesitate to ask for help. We had a next-door neighbor along with paid sitters who helped with the children.
In spite of our multiples' special needs, my husband and I now try to treat our sons like "regular" children. We do hesitate to set limits for discipline. Building confidence at an early age is important, so we encouraged the boys to play soccer and tennis. Both sports have therapeutic benefits and are activities they can have fun doing. We have only one rule, "There is no such word as can't, you have to try." It doesn't matter whether they can hit or kick the ball, just as long as they are having fun; the rest will fall into place. And it has. Each week they improved.
Raising multiples with special needs is never easy. We had bumps along the way, but now we are in a good place.