Advocating for Your Special-needs Child: One Mom’s Advice

For 19 years, Gloria’s life revolved around advocating for her son, Jacob.

Born with an extremely rare genetic mutation of the KCNB1 gene and cerebral palsy, Jacob was later diagnosed with Lennox-Gastaut syndrome and struggled with seizures all his life. He endured brain surgery and a medically induced coma before his body finally gave out in fall of 2017.

Even though Jacob is gone, Gloria knows she can honor his life and make sense of his struggle by helping others navigate the healthcare system. Here, she offers tips to help you advocate for your child if they have complex medical needs.

Listen to your gut

“If you think something is going on with your kid, get it checked out. Try your pediatrician, then call a specialist. Keep pushing until someone can tell you what’s happening, why and what can be done to help,” Gloria says.

When Jacob was born, everything seemed fine. But in the following weeks and months, small changes began to occur: his eyes crossed, he vomited repeatedly, he missed developmental milestones and seemed to struggle to hold up his head. By the time he was six months old, Gloria sought answers from her pediatrician, then a neurologist at Children’s Hospital of Philadelphia. Further testing revealed Jacob had cerebral palsy and would need early intervention services.

Fight to get the help your child needs

“Use every resource at your disposal to seek out more. You are your child’s greatest champion and you know your child better than anyone else. Keep pushing for the services your child needs,” Gloria says.

Jacob’s early diagnoses made him eligible for Pennsylvania Early Intervention Services ― such as physical therapy (PT), occupational therapy (OT) and speech therapy ― from Bucks County, where the family lived. But, it was up to Gloria to continually advocate for her son to receive the additional services she felt he needed such as cognitive and adaptive support.

When Jacob turned 3 years old and aged out of home-based early intervention services, Gloria again rallied for her son ― repeatedly requesting services and gathering proof her son needed more help. Jacob was admitted to the daily program at the Bucks County Intermediate Unit where he received five to six hours of adaptive physical education, OT, PT, speech and vision services.

Find a good developmental pediatrician

One key to getting extra services your child may need ― such as nursing, aides and durable medical equipment ― is finding a developmental pediatrician who is willing to work with your family to find the right solutions for your child, Gloria says.

“We really lucked out finding Dr. (Mary) Pipan (MD) at CHOP. She and our primary care office at HighPoint were so helpful in getting us the wrap-around services, nursing services and durable medical equipment we needed to care for Jacob at home.”

Armed with a letter of medical necessity by CHOP, Gloria was able to get Jacob an aide when he went to school, a helmet and gait vest to keep him safe when he had seizures, and eventually a one-on-one bus aid to travel with him to and from school.

Keep all your medical records

Keeping track of Jacob’s many medical conditions was a challenge, Gloria says, but it also kept her focused.

Jacob started having seizures when he was about 13 months old, but at first the episodes were rare and limited to one or two a year. When Jacob turned 7, the seizures dramatically increased to nearly 300 a month.

“I recorded everything. Seven seizures two days ago, 25 yesterday, 31 today. And I shared that information with Jacob’s doctors,” Gloria says. As a result, doctors prescribed medication, and later a new dietary treatment plan ― a combination of an elemental diet and a ketogenic diet ― to treat Jacob’s symptoms.

Explore your treatment options

“Don’t be afraid to get a second opinion ― or a third,” Gloria says. Finding solutions to address multiple complex conditions, like Jacob had, can be daunting and a second opinion can never hurt.

“CHOP has always been part of Jacob’s care team but we did ask other hospitals for second opinions when we were unsure if it was the right treatment for Jacob at that time,” Gloria says.

Ultimately, almost all of Jacob’s care and treatment was provided at CHOP.

Embrace the small moments

“Relish the small moments in your child’s life and the things that make them smile,” Gloria says.

Jacob expressed a child-like wonder in the world around him. Because of his cognitive disabilities and physical limitations, Jacob continued to love things from his early childhood, even as a teenager. He loved bubbles, and Sesame Street, and board books like The Very Hungry Caterpillar. He enjoyed walks in his stroller, singing songs and his very favorite was Baby Beluga by Raffi. He also had a bit of mischievous side and loved to provoke reactions from those around him.

“Jacob was so happy and always laughing,” Gloria says. “Spending time with him reminded me every day what was important.”