Some parents have the daunting task of explaining both their child’s disability and food allergy needs to all the child’s service providers.
Looking at what experience has taught these intrepid parents can assist others - providers and parents - new to the same challenge. It also reveals the continual vigilance and advocacy required to protect these dually diagnosed kids.
Six Tips For Managing Food Allergy and Special Needs
- Keeping a food allergic, special needs child safe necessitates building a supportive team that includes the child’s allergist, personal support workers, teachers, therapists, family members, and other care givers. Each of these individuals must be educated about both the child’s allergy and special needs. Ideally, team members will be in communication with one another.
- Parents need to watch for gaps in their child’s safety plan. For instance, a special needs child may see a speech therapist at school. If the therapist is hired as a contract worker he or she may not be trained, as are other school personnel, in the use of epinephrine auto-injectors.
- It is natural for clinicians to focus on their specialty. Inadvertently, a developmental pediatrician might overlook the impact food allergies have on a young patient’s life, while an allergist may fail to realize the challenges developmental delays create for allergy safety. Parents need to patiently reinforce their child’s full spectrum of needs to each professional, and help providers communicate effectively with the child.
- Being present as much as possible in the child’s clinical therapy and school settings helps parents spot any gaps in safety or care. The most effective way to be present is volunteering whenever possible. Through volunteering, teachers and other providers come to appreciate a parent’s help, and are less likely to label a parent as “that crazy food allergy person.”
- Kids with special needs might be chronologically old enough to begin managing their allergies, but not yet developmentally ready for the responsibility. Some will move toward allergy self-management incrementally, needing months or years of patient, continuous education and positive reinforcement.
- By respectfully encouraging and cultivating communication between a child’s service providers, parents can strengthen the effectiveness of their support team. A simple note from an allergist to a pediatrician, or from a teacher to a lunch room supervisor can prevent gaps in care from occurring.
“When a child has both allergies and special needs, this can cause some strain within schools and social services institutions,” says Dr. Suneeta Monga, Medical Director, Psychiatry Ambulatory Program at the Hospital for Sick Children in Toronto.
“Parents and families therefore need to ensure that within both systems the necessary education is made available to the professionals working with their child as well. They need to advocate that their child’s allergy and special needs are both met.”