By Anne King
I recently spoke with five moms of kids who have food allergies as well as autism or developmental delays, to learn about the specific challenges they face. Each parent spoke of the need to have a team family, allergist, therapist and school working together to understand the nature of the dual diagnosis.
To get an idea of what can go wrong when everyone is not on board, take a look at the following examples.
The OT mix-up
An occupational therapist (OT) uses food, such as dried beans, when working with kids. Sarah, who has a language delay and food allergies, is a new client. Back in their introductory meeting with the OT, Sarah’s parents had mentioned her food allergies, but the information got lost in the discussion. After the first one-on-one session, Sarah came out crying with hives on her hands and face.
What happened: The OT was so focused on discussing Sarah’s language delay that she did not listen to what was being said about Sarah’s allergies. A follow-up call from the allergist to the OT reinforced the information.
A plan without a plan
Luke, who has Down’s syndrome, recently started at a new school. He had an anaphylaxis education plan posted in the front office. Although the classroom support worker was made aware of his allergies, his parents wondered what would happen if she was out sick and a substitute was called in.
What happened: Although Luke’s anaphylaxis education plan was posted in the office, it was not included in his IEP (special education notes), which a substitute teacher would use as a guide. Luke’s parents arranged a second meeting with the school to ensure that his allergy plan was integrated into his IEP.
Allergists as part of the team
Lily, who lives in a small town just north of Toronto and has a nine-year-old daughter with global developmental delays, had educated her daughter’s allergist about her special needs from an early age.
When it was time for Lily’s daughter to start full-time education, her allergist sent a letter to the school and helped to write her allergy plan, which looked a little different to a standard plan and included a personal aide at lunchtime. “We knew a support worker would be necessary because she snuck food at that point, and could easily have taken another student’s snack and eaten it,” says Lily.
Everyone on board
Jaclyn, whose son Jaden is now 15 years old and has a range of developmental issues, took a team approach, educating about allergies all the way. “Once we assembled a team of special needs providers that agreed on my son’s needs, they were great to work with,” she says. “We are still in touch with many of them almost 14 years later.”
Some of Jaden’s greatest helpers have been his classmates. This includes the “lunch bunch” who eat with Jaden and help him to stay safe, and once protected him against a bully with a peanut butter sandwich. “They have always been very supportive,” says Jaclyn.
Watching for gaps
Parents might think they have educated everyone at school, but what about contract workers? Lily recalls: “I found out my daughter’s speech therapist at school was not trained [in using an auto-injector]. He is not an employee of the board; it’s a service contracted to the school.” Like Lily, many parents work with teachers and support workers to identify any missing links.
Another gap can be “tunnel vision,” where a clinician is so focused on any developmental issues that they overlook allergies and their role in the child’s life. Jennifer, whose son has food allergies and is on the autism spectrum, notes: “The biggest challenges faced in managing his allergies is getting other people to recognize them. I think many providers are also missing the mark of understanding the compounded stressors families are facing when they have children with a dual diagnosis.”
Parents, who know their children best, can model how to communicate with their children during appointments and in other settings. Dr. Suneeta Monga, medical director of the Psychiatry Ambulatory Program at the Hospital for Sick Children in Toronto, notes that some allergists or other clinicians “may require reminders from parents as to the best way in which to communicate with the child who has special needs.”
For Jaclyn, being present at her daughter’s school and clinical therapy settings has helped her to observe where there are gaps in allergy awareness. She advises parents, “Volunteer whenever you can. When the teacher sees you coming, you want her to think ‘So here she comes, she is so helpful,’ not ‘Here comes that crazy food allergy mom!’”
Parents can face unique experiences with the transition to self-management, depending upon the level of developmental delay.
“Children with more significant cognitive delays may be ‘chronologically old enough’ to manage their allergies; however, they may not be ‘developmentally mature enough’ to manage their allergies on their own,” says Monga. “Sometimes families themselves struggle with understanding their child’s development delays and needs, and sometimes may inadvertently put too much responsibility onto their child when they are not ready. Families should make sure they have a good understanding of what they feel their child is capable of taking responsibility for and what needs to be delegated to caregivers.”
Lily describes her daughter’s journey towards self-management as involving years of hands-on effort. She is now seeing the rewards of all their hard work. “Until last year, my daughter would take food from people: Eat first, ask questions later. That made school very scary. Now, she questions even us!”
She continues: “What we are working on with her now is how to word things, especially when she goes out to eat. We are also working with her to slow down and speak clearly. When she asks if something is safe for her to eat and she hands us a package, we hand it back to her, and ask her to check and see what she thinks. We then double check.”
Thanks to her parents’ planning, Lily’s daughter is developing her food allergy management skills.
Educating the educators
“When a child has both allergies and special needs, this can cause some strain within schools and social services institutions,” says Monga. “Parents and families need to ensure that within both systems, the necessary education is made available to the professionals working with their child. They need to advocate that their child’s allergy and special needs are both met.”
Parents of kids with special needs often take on the role of educator, bridging any gaps in the service team’s knowledge. It is a lot for individual parents to carry on their own, and hopefully more resources will become available to assist families of dual-diagnosed children.
Petra, whose son has autism, puts it this way: “I read a lot about how my child can be just like everyone else. But the thing is, he’s not just like everyone else.”
Anne King is a mom and writer. She lives in Toronto.