by Erika Goyer, Hand to Hold Program Director
My nephew made me cry this morning. Well, let me rephrase that. My nephew made me smile; it was my sister who made me cry.
The text dinged onto my phone last night right as I was falling asleep. It read, “Edison is a walker!” Edison has been doing a very capable job cruising around behind his sisters for several months now. Megan told me that both they and the physical therapist were pretty sure he would take off and toddle any day now – but so far he hadn’t decided to put all his skills together and launch.
This morning I sat down and watched the video my brother-in-law and sister had posted on their blog (Brian & Megan’s Triplets). That’s when the tears started. It wasn’t the sight of my nephew toddling across the floor as his two sisters cheered him on that got me. It was what I heard when I turned the volume up. My sister Megan, who was holding the camera, was coaxing Edison across the room and in her voice I could hear the exquisite mix of emotions: anxiety and joy and relief and elation. You’ll understand a little bit more if you read what it says above the video. “On Friday we received the diagnosis of mild CP. So we are overjoyed with Edison’s progress!”
Edison and his womb-mates, Ginger and Daisy, were born at 32 weeks and spent a couple of months in the NICU. It wasn’t a surprise to my sister and her husband. They knew that having triplets meant they would be doing some time there. And, frankly, Megan and Brian did everything they could have been reasonably expected to do to prepare. But the truth is no matter how much you prepare you never really know what the outcome will be.
You can almost say with certainty that every child who spends time in the NICU will experience a developmental delay of one kind or another. Whether it’s the result of weeks spent outside the womb or the series of medical interventions and procedures that accompany a NICU stay, you can expect there to be effects on our babies’ development. Some of those effects are immediately apparent and others will take years to emerge. And truth be told, some of our children would have had developmental issues whether or not they had ever been in the NICU. So no matter what the cause may be, it’s important that parents prepare themselves to address their children’s unique developmental needs.
Every child should get periodic developmental screenings with their pediatrician. Because our children are at greater risk for certain delays, it makes sense to consider seeing a developmental behavioral pediatrician. No matter where you get care, regular screenings and assessments will help you and your providers decide what therapies or intervention might benefit your child. Often private insurance and Medicaid will cover all or part of the expense of physical therapy, occupational therapy, or speech and language therapy that is prescribed by your doctor. But there are also services available through state agencies at little or no cost.
Early Childhood Intervention programs are available in every state. This is because states have a mandate to serve any child from birth to age three who has a developmental delay, atypical development or a diagnosed medical condition. Anyone, including the parents, can refer a child for Early Intervention Services by contacting their state agency or talking to their pediatrician. Once a referral is made your early intervention program provides an evaluation, at no cost to families, to determine eligibility and the need for services. Families and professionals work together as a team to plan appropriate services based on the unique strengths and needs of the child and family. This is called an Individualized Family Service Plan (IFSP) and should be completed within 45 days of the referral. All the services your child qualifies for will be managed by the Early Intervention Service Coordinator with your assistance and should take place in the child’s “natural environments” which is anywhere your child spends time – be it home, school, church or the neighborhood playground.
No matter what your child’s needs are or where you decide to find help, it’s important to remember something Hand to Hold parent Lacey Deal told me. She said, “Your child is going to grow and change in so many ways. Try very hard not to compare your child to other kids. My son was born three months early. Some milestones he hit before he was scheduled to and others he hit late.” She added,“Take advantage of any therapy that comes your way. It is always helpful to have someone there that can give you tips and advice.”
With patience and their parents’ attention, each of our kids will make their unique developmental journey step by step. And sometimes the beauty of it will make you cry.
Erika Goyer is the mother of three boys and a Family Support Navigator and Program Director of Hand to Hold. Her oldest son Carrick Michael was born at 27 weeks gestation and weighed 1 pound, 14 ounces. Carrick died soon after his birth due to complications of prematurity. Erika went on to have two more high-risk pregnancies and two healthy sons, one of whom has developmental delays.