When you spend hours every day feeding your child and running to therapy and medical appointments, starting school can seem daunting. Whether it’s at age 3 or later, there comes a time when your child is ready to head to school.
We asked three women experienced with different school stages for children through young adults with pediatric feeding disorder (PFD) to offer advice. Following are their stories and advice.
Transitioning to preschool with PFD
At the age of 2.5, when most toddlers’ parents are thinking about starting preschool, Liz Wiseman Smith was busy with too many hospital stays to count. Still, helping her daughter, Zoe, reach age-appropriate milestones as best she could was a priority.
Zoe was born prematurely with heterotaxy syndrome, which occurs when the heart and other organs are in the wrong place in the chest and abdomen. Before the age of two, she had five cardiac surgeries. Reflux from gastroesophageal reflux disease (GERD) meant that she needed a gastrojejunostomy tube (GJ-tube) that allowed her to eat through her intestine.
Health complications meant Zoe had just begun walking six months before school and communicated through sign language. Despite all she’d been through, the family was determined to help Zoe thrive.
“Our goal was trying to get her caught up as quickly as we could, but there was a lot to focus on,” says Liz.
Set up a communication plan
In Massachusetts, Liz was accustomed to a robust early intervention program where clinicians came to her home and left details from every session. Starting preschool meant figuring out how to transition from this open communication model to public school special education, which wasn’t likely to meet that same level.
Liz took it upon herself to initiate communication and found her daughter’s school was responsive. Zoe’s preschool teacher even developed a communication plan using a notebook, which the nurse updated.
Be sure your child’s school has the nursing staff you need – and a plan for substitutes
For kids with complex feeding issues, especially with feeding tubes, the school nurse is an integral component to successfully transitioning to a new school. This means connecting with the nurse before school and also ensuring the school has a plan for any days when the nurse might be absent. For Zoe, this meant she started school three weeks late because her school initially couldn’t find a nurse.
Transitioning to elementary school with PFD
Yomi Ogedegbe’s son, Joshua, is seven and beginning third grade. Although he is on the autism spectrum, he wasn’t diagnosed until age 4. He struggled with feeding since beginning solids, eating mostly a pureed diet, but only recently was diagnosed with oral dysphagia.
Having specific diagnoses has been key to accessing therapy services in and outside of school with insurance coverage.
Navigating her son’s autism and pediatric feeding disorder has meant that Yomi has learned valuable lessons about making the most of education and services in school.
Make your child’s IEP as detailed as possible
Yomi considers parents a key partner in developing her child’s Individualized Education Plan (IEP). Rather than leaving it to Joshua’s team of therapists, she did a lot of research to figure out what to include in the documentation. “If there are things that you think will be helpful, research to get the information so that when you ask for something, it’s backed by evidence,” says Yomi.
Be your child’s advocate
Just because something is written in your child’s IEP, doesn’t mean it’s necessarily followed all the time. Yomi says she regularly looks at Joshua’s IEP and calls to check with his case manager. “When they know you’re regularly keeping track of everything that’s supposed to be done, there’s more incentive to do what they’re supposed to,” says Yomi.
Ensure continuity of care
When your child receives therapy services, connecting the school team with outside therapists is important. For example, Joshua spent a month in an intensive feeding therapy program. Yomi connected her son’s school speech therapist to the feeding program team so that she could get trained on how to continue supporting Joshua’s feeding goals.
Transitioning to teen years and beyond with PFD
When Dana Kizer, MS, OTR/L was in school with her brother, Sean, who is medically complex, there were times when she would have to step in to support him. Once when Sean was more sensitive to touch and getting wet or messy, Dana saw him accidentally spill his lunch tray and had to run over to keep him from taking off his clothes in the school cafeteria.
Today, Dana is an occupational therapist, and her brother works part-time at Barnes & Noble. Thanks to feeding therapy support, Sean can enjoy a variety of foods and textures with safe oral motor skills. Still, he does sometimes need cues for pace and bite size.
As an OT and a sibling who continues to help out, Dana offers some tips for transitioning to high school and beyond.
Not every time can be therapy time
In times of stress, transitions and routine changes, it might be important to lean on comfort foods. For example, when Dana’s family went on a cruise, Sean would only eat chicken tenders by the pool. Out of his normal routine, it took a few days to adjust and for his anxiety to decrease. After a few days, Sean could eat a variety of foods without it being forced or stressful. “What we learned as a family is that we’re not always in therapy mode,” says Dana.
Focus on episodes of care
Transitioning to high school, college or a new job might mean your child with PFD needs what Dana calls short bursts of therapy focusing on a few goals. As an occupational therapist, many clients will see her in the summer to prepare for increased independence before a transition. This is especially important for teens and young adults who need new, age-appropriate regulating methods. “They might plateau in feeding therapy or take a break, but they return when their maturity level increases and they’re ready to be more independent.”
Having a child with PFD at any age means constantly adapting and learning. Getting support from those who have been through the journey before makes these transitions a lot easier.
This blog was adapted from a panel at the International Pediatric Feeding Conference. All three parents are members of the Feeding Matters parent advisory board.