It’s back to school time. Time for school supplies and new backpacks, new clothes and fresh haircuts. For families living with FPIES, back to school time means something else. Time to worry if your child is safe at school. Time to worry about every birthday treat, special snack or basic lunch that is served. Time to worry about educating teachers. Time to worry that special allergy tables could isolate your child.
Imagine a school where the mission is to take that worry away. A school where allergies are the norm. A school with a zero reaction rate in its entire history.
St. Stephen’s pre-school in St. Louis, MO prides themselves on being a safe allergy-free environment. Laura Schulte founded the school 12 years ago after 2 scares with her own children who both suffer from multiple allergies. She tried 2 different schools and ended up in the emergency room 2 days in a row with her boys. She couldn’t go back to work because she couldn’t keep her children safe.
“It’s tiring and it’s isolating being a parent of an allergy child. I cannot believe how alone I felt in this. I remember thinking I never wanted anyone to feel like that,” Schulte says.
She decided to do something about it, helping found St. Stephen’s Allergy Free Pre-School. The school is completely free of the top 8 allergens and then will further eliminate other foods as needed to accommodate children. The school prepares all meals and all snacks. Schulte oversees the grocery shopping and personally chops the fruits and vegetables for about 70 children a day. Schulte prides herself on never having a child come through the school and have an allergic reaction.
The school also isn’t just about keeping the kids safe. It’s about making them feel included. There are no special allergy tables, no birthday cakes being passed around that every child can’t enjoy.
“If one child cannot have it then we just don’t have it,” Schulte says. “We don’t separate the kids. The whole purpose is that everybody can sit and be together. I think the majority of parents appreciate the all inclusive atmosphere that we have.”
That all inclusive atmosphere makes St. Stephen’s an attractive option to a lot of other children too. Schulte says they get many special needs children, children who use wheelchairs or are autistic, or have diabetes. She also says more than half of the children don’t have any allergies or health issues.
Schulte says she knows FPIES children can be more complex than children with more mainstream allergies. Every FPIES child is different, with different triggers. St. Stephen’s might not be able to accommodate a child who can’t eat anything, but she says they’re willing to try.
She says parents have to be their child’s biggest health advocate. Most parents don’t have a school like St. Stephen’s near them so she offers this advice:
- Look for a school that can accommodate your WHOLE child
- Ask questions and come up with a plan before the school year starts (At St. Stephen’s they help parents transitioning to public schools come up with a 504 plan which specifies no one with a disability, including food allergies, can be excluded at school)
- Sit down and explain your child’s allergies to the school nurse
- Be realistic and honest with teachers and staff
12 years later Schulte’s sons are now 16 and 14 years old and 849 children have come through the doors of St. Stephen’s. Schulte and her staff have learned a lot and Schulte hopes she’s making a difference, helping these families feel there’s a safe place for them.
She says wherever you live, shop around and find a school that’s a really good fit.
“You’re going to have people who think you are that crazy parent. You have to thicken your skin a little bit because you are that crazy parent. You don’t want to be that crazy parent but you have to be that crazy parent.”
Visit Allergy Free Preschool website here: http://allergyfreepreschool.org/home.html
Interview conducted, and article written by Victoria Warren. Victoria is a television news reporter for the NBC affiliate in Boston, WHDH-TV. Victoria is a parent volunteer with The FPIES Foundation Volunteer Advisory Board. Follow Victoria on twitter @VWarrenon7.