By Margaret Szabo, EI Coordinator, Ottawa County Board of DD
When parents are told their child has a developmental delay, a disability, or a medical condition likely to result in a delay or disability, they often go through overwhelming feelings of shock, disbelief, anxiety, fear and despair; life takes on a new normal. Normal becomes internet searches, insurance questions, paperwork, being put on hold, and a constant wonder of what’s next. There are no manuals, rules or guides because every child and family is unique. Normal becomes celebrating little victories, teaching compassion and courage, and finding out that you and your child are capable of so much more than any search result would indicate. You’ll also find that you are not alone. There are other parents like you with similar situations, and resources and agencies there to assist you.
When my nephew and his wife were expecting their first baby we were excited to have a little one in the family again. Kyler was born a year ago in June with medical concerns noted right after birth. He appeared floppy, had trouble feeding and the fact that he didn’t cry was alarming. He was admitted to the neonatal intensive care unit with tubes everywhere, and had extensive medical exams, including bloodwork for genetic testing. I can’t imagine the roller-coaster of emotions these new parents were going through. One month after his birth Kyler was discharged home on a feeding tube and oxygen; and the family began the next stage in their new “normal” life.
Several weeks after Kyler was home he received the diagnosis of Prader-Willi syndrome, which is a rare genetic disorder. Accompanied with life threatening complications including poor muscle tone, a weak suck, and poor weight gain, he eventually will have other characteristics, with the key feature of having a constant feeling of hunger which begins around 2 years of age. People with Prader-Willi syndrome want to eat constantly because the part of their brain that controls feelings of fullness or hunger doesn’t work properly and therefore they often overeat, leading to obesity. Kyler's mom shares “his birth has brought out so many amazing things in us. I never thought I could tell a doctor, “No, you're wrong,” but I've done that more times than I can count. I also never thought that I could use a feeding pump, pulse-oximeter, or haul oxygen tanks up stairs and through parking lots. Prader-Willi Syndrome has brought out the best, and the worst in our family, but we're still standing.”
One of the supports the hospital linked Kyler and his family to was Early Intervention. Early Intervention is a service provided in Ottawa County by the Board of Developmental Disabilities. The program provides family-centered services for infants and toddlers to age 3 with a developmental delay, disability, or a medical condition likely to result in a delay or disability. As the Early Intervention Coordinator for the Board of Developmental Disabilities I have witnessed firsthand how these supports can help you navigate through your new “normal” life. A Service Coordinator assists the family in identifying what needs Kyler and his family have and then links them to supports specific to meet those needs. There is a team of professionals who assist every step of the way in his learning and development. Depending on the unique needs of a child who is determined eligible for services, children can receive supports from an Early Intervention Specialist who specializes in all areas of development, a Speech-Language Pathologist, Occupational Therapist, or Physical Therapist. No matter who serves the child, this team of professionals is working together behind the scenes to give each child and family the tools and strategies they need to be successful.
If you have an infant or toddler up to age 3 that you have concerns with or if your child has been diagnosed with a developmental delay or disability there is help! Contact Early Intervention at the Ottawa County Board of Developmental Disabilities by calling 567-262-3141 and let us provide support to you in your new “normal” life.