This article first appeared in Preemie Babies 101 - Hand to Hold in October 2015.  

 

“Sit Down!!!!” This phrase is repeated more often with my 5-year-old son then any other. Born 2 ½ months premature at 2 ½ pounds due to pre-eclampsia, Giovanni has been a source of energetic strength, inspiration and courage the last five years.

I spent four days on bed rest prior to birthing Giovanni by emergency c-section. A few days prior to his premature birth, a neonatologist came in to provide counseling that premature infants often experience a 95% chance of Attention Deficit Hyperactivity Disorder (ADHD).1 Our son has the genetic makeup of two parents with ADHD or ADD, in addition to the prematurity risk, so did not come as a surprise that he would be diagnosed with ADHD at the early age of four.

We first identified Giovanni’s ADHD symptoms as early as 14 months old. Despite the weekly support from Early Childhood Intervention since birth, Giovanni had significant global developmental delays. When he lacked sufficient sensory input, he would bang his head against the floor as a way of getting the sensory input needed. When he had too much sensory input, he would bang his head against the floor to help organize his proprioceptive system. It became a delicate balance of interpreting his body language and keeping his proprioceptive-sensory system balanced.

While in Early Intervention (age 0-3) his occupational therapist wrote his Individual Family Service Plan (IFSP) to include skills relating to increasing his attention span. Examples included increasing his ability to sit and eat at a table for mealtime or increasing his ability to sit for preschool circle time. At the start of this implementation, it felt hopeless. Giovanni made very tiny increases to his ability to attend to his Early Intervention therapies. Years of therapy went by, and it was clear his inattention far exceeded that of other preschool children. As he grew older, age 3 or 4, his inattention could no longer be attributed to that of an energetic boy. Boys two years younger were sitting at snack without difficulty. It felt more disheartening then any other element related to his prematurity.

A few months after Giovanni’s 4th birthday, we heard about an educational psychologist who had 30 years experience working with ADHD children. This psychologist offered an extensive report and evaluation and stated while our son was hyperactive, he wasn’t as bad as we thought. Really? Doubtful. We were advised to be patient and to continue Early Intervention therapies and not to pursue medication until age 6. Convinced that Giovanni’s genetic background in conjunction with his prematurity, we were referred to our local children’s hospital for further evaluation. Within 15 minutes of an evaluation, the pediatric psychologist identified ADHD, explaining that due to the toxic stress of my pregnancy as a result of my career in the insurance industry during the Great Recession, Giovanni’s genetic predisposition and prematurity led to his ADHD. While 15 million babies are born premature each year, only a small portion of premature births are due to toxic level intrauterine growth. The pediatric psychologist isn’t referring to prematurity stress; he was referring to women who undergo significant stressful conditions during pregnancy such as a physical trauma, major career change, a flood in the house, Swine Flu, jury duty (I had all of the above).

Giovanni was given his first Ritalin prescription, and his journey towards improving upon his developmental delays began. Within one year his occupational therapy report showed an overall improvement of 46%.  He graduated speech therapy within six months. We left the Catholic school he had been attending for special education with an IEP and within a few months downgraded his need for special day class services.

Life with an ADHD child feels a lot like a chase for answers in one direction while chasing the child in the opposite direction.  This week we are upgrading his IEP yet again, as he’ll soon be tested for an Auditory Processing Disorder. As a parent who has been on this journey, I can assure you that despite the wild ride, it can be energetic fun. I have learned to laugh at my son’s zany behavior, loving the crazy as a way of enduring the hardships. Or perhaps I have to laugh quickly while pivoting to catch my child bent on swinging from our ceiling fan.

1Phend, C. (2011, April 20). ADHD More Likely for Preemies.