Enough is Enough

For the last few weeks, I’ve been fighting the strong urge to speak out publically about an issue at Liam’s school – one that’s seen him miss classes and made us the topic of conversation in the staff room – but, as Popeye would say, “That’s all I can stands. I can’t stands no more!”

I do apologize that this will be a long post, but I’ve included headings to help organize my thoughts and assist in reading.

Background
All three of our boys are allergic to peanuts. Joseph and Keeghan, our older two, only react if they eat trace amounts. Liam, our youngest, is by far the worst reacting of the three. He is anaphylactic to trace amounts (down to 10 ppm) but he is also airborne allergic. This means that if you eat peanut butter – or anything else with nuts – and are in the same room with him, he will react to you. Our allergist has told us that he is in the 1% of children with peanut allergies who have this airborne trigger. His reactions are also atypical – there’s no swelling or rash. Instead, he loses blood pressure that if left unnoticed can (and has) put him in the emergency room.

School Life Before
Liam was diagnosed with this allergy three years ago. Two years ago, at age 4, he started school. The boys’ school and the parents of his classmates until now have been very understanding and supportive. The school has an “avoidance policy” for every student with a food allergy. This policy describes accepted and agreed-upon procedures for reducing the risk of exposure to the child’s allergen(s). Part of Liam’s avoidance policy is that the students’ lunches are checked for non-peanut-free snacks.

This school (which I will not name, because the faculty and staff have been very cooperative with us over the years) is too small and too crowded (read “old”) to allow for a lunchroom, let alone a peanut-free table within it. For this reason the primary students eat their lunch and snacks at their desks. Hence the need to ensure that, as the school board policy states, “the students have a safe environment in which to learn”. So for the last two years, Liam’s class lunches have been quickly checked each morning. The children place their lunches on a bookshelf outside the classroom. While class begins, the lunches are discreetly checked – not someone groping through the lunch bag, but a quick glance at packaging and gently shaking the bag to see any that may be obscured. This is something that my wife Krystyne has volunteered to do since Day One. She is phenomenal at differentiating “safe” and “unsafe” items quickly – it still amazes me. If something is found, Krystyne quietly asks the teacher to speak to the child, and they are asked if they could put the “unsafe” item in their backpack to enjoy after school. The student is then offered a peanut-free item to replace it (which we have bought with our own money and left in the classroom for this purpose), and the day continues.

In this way, we are taking the responsibility of keeping Liam safe back on us rather than burdening others with it. The teachers, staff and other parents have often thanked us that this worry has been lifted from their shoulders and that, as one mom put it, “even if I screw up and accidentally put something in there, I know it’s going to be caught.” Krystyne has also volunteered to do this for another touch-allergic student who started Kindergarten this year as part of his avoidance policy. And despite everyone trying their best, there have been “unsafe” foods found.

But No More - “The Incident”
Three weeks ago, the mother of a child in Liam’s class decided that this showed a “lack of trust” on our part and asked the vice-principal that the lunches no longer be checked. The mother suggested that Liam could eat his lunch outside of the classroom instead. The vice-principal agreed with us that this did not help avoid exposure to peanuts, as Liam’s classroom could still be contaminated. Not finding any satisfaction, the mother then went to the school board complaining now of privacy concerns. In a knee-jerk reaction, the school board went against Liam’s established avoidance policy and put a stop to the lunch checks.

In a long, tearful meeting with the vice-principal, we came to the conclusion that if the school was unable to provide a safe environment for Liam, he could no longer attend until it was resolved. We offered to sit down and talk with the other mom and asked the vice-principal to convey that message to her, but in the end we were left with no other choice but to keep Liam home until the matter could be addressed.

Sadly this decision affected the touch-allergic child as well, as his classmates’ lunches were no longer being checked either.

School Board Miscommunication
After downloading and reading through the policies available on the Durham District School Board’s website we saw that, indeed, the board was going against its own guidelines. We left messages for trustees, administrators, superintendants, but got no answers. At this point we called our MPP (Member of Provincial Parliament), who assured us that under Sabrina’s Law we were fully within our rights and that he would gladly help us – but cautioned that the matter would become immediately public once he got involved. We thanked him and declined his offer for the moment to allow the possibility of a resolution through the school board. Liam remained home, feeling that his friends no longer wanted him in the classroom.

Finally we were contacted by the School Board’s administrator, who informed us that she had talked with a representative from Anaphylaxis Canada and been told that in her words, “airborne allergies account for only 1% of food allergies, so don’t worry about it.” Needless to say we were taken aback. We spoke with the same representative at Anaphylaxis Canada who assured us that she was grossly misquoted, and that the school board administrator did not even mention that she was inquiring about an airborne allergic child. It took a few days of back-and-forth calling for the administrator to understand Liam’s documented sensitivity and severity.

Since then, we have talked with other members of the school board (we were originally told to only deal with the administrator), and a plan was arranged to be put into place.

Baby Steps
For the first week, Krystyne was constantly on the phone. The principal at Liam’s school had taken over the matter from the vice-principal, and one morning we went in to discuss if there was any progress since talking with the board. We brought Liam with us, as it was his education (and life) we were dealing with, and we make it a point not to lie to our children about what’s going on. Within 5 minutes of being in her office, I noticed the first signs of Liam having a reaction – you could start to see the veins through his temples. If we catch it at that point and keep him active (natural adrenaline), we can usually halt the reaction with Benadryl, which he also carries with him. While Liam munched on the pills and bounced around the office, we explained how we can never know what triggers his airborne reactions – maybe residue on a doorknob or surface, someone in the outer office, anything – and that’s how subtly they start. While unplanned … and definitely unwanted … Liam’s reaction that morning helped the principal understand what she was dealing with. So a “lunch check permission form” was drafted to be sent home with board approval.

During this time, a number of parents had come to us and asked if we knew which mother it was (“No.”), if we wanted them to write a letter (“Sure, but only to the principal or board. Not the media.”), or if there was anything else they could do (“Just keep praying.”). We didn’t tell many people what was going on other than the bare minimum, since we didn’t want to be what everyone was talking about around the dinner table.

The school board has since said to us that they have never received as much support – or even comments either for or against – on any issue in the past as with the support from parents on this one.

A few days later, all but 2 permission forms had come back with resounding support of the lunch checks, and the decision was made that any children with “No” forms would eat in another classroom and have to wash their hands and faces before coming back into Liam’s class. After a full wash down of the classroom, we sent him back to school, and all but those 2 lunches were allowed to be checked in the manner they were before.

Ostracised!
The next week, another complaint came in from the same mother that her child was being singled out by eating in another room. So in another knee-jerk reaction, all of the students are once again eating in Liam’s classroom regardless if their lunches have been checked or not. Once again policies are being thrown out the window and a child’s life is being threatened.

The two Grade One classes fully interact with each other – they use each other’s classroom for activities often, such as making crafts, and using wooden geometric shapes and blocks in math. This is why originally both classes’ lunches were being checked. The closest sink/washroom to the classrooms are two floors down, so sending them downstairs before each time they merge would take away too  much instruction time.

Under the advice of other principals in the region, the school’s annual bake sale was cancelled and replaced with a “peanut-free Halloween treat sale”. The school actually made more money with it than with previous bake sales.

And this is not just overreaction by a food-nazi or an overprotective parent. There have been incidents in the school with kids bringing mixed nuts for snack, or claiming they have peanut butter on their fingers as they chase known allergic children around the playground. A couple years ago, one mother in another grade heard that they were not allowed to send peanut products with their child and deliberately packed a jelly sandwich with a dollop of peanut butter in the middle. Luckily, their child knew she had, and took their lunch to the school office to tell them about it.

The Last Straw
This morning while Krystyne was checking the lunches, she was handed a note about an upcoming class activity in which the primary classes will be making a vegetable soup lunch. Among the list of things for parents to bring is french bread. Bakeries are understandably notorious for cross-contamination. In the past, we have offered and provided treats and peanut-free baked goods for the class. Krystyne offered to bake all of the bread and bring it in. She was told by Liam’s teacher that it might be better to keep him home that day instead.

For the first time since all of this started, the classes merged for an activity this morning. Within minutes Krystyne noticed that Liam was having an airborne reaction to someone else in the classroom. So out came the Benadryl and she stayed with Liam to make sure that the reaction had been halted.

So while the principal and most of the parents have been very supportive, the matter is still unresolved and we can no longer trust that Liam has a safe learning environment. For that reason we have decided to bring it forward publically in the hopes that this can help educate others, and raise awareness about the need for safe learning environments for students with severe food allergies.

Other information on Sabrina’s Law can be found here.