Our little girl will be attending school for the very first time this year. It's a grueling process for most parents but for allergy moms (and dads; let's not forget the dads, they're pretty special too) it is especially nerve racking. Talk about sending your child into a minefield...
We are currently in the process of communicating with the school administration as well as the HRSB and IWK nurse, all for the benefit and safety of our little girl. I must say, once we figured out the proper channels and the right people got involved, everything just sort of clicked. The school, in my opinion, is doing a great job preparing for our daughter's enrollment. Between the principal, vice principal, teacher and other staff, they all seem to get it. I was apprehensive at first, but now both my husband and I feel confident that the school staff understands the severity of our daughter's allergies. In my opinion, they are doing a good job of addressing my concerns and are doing the best they can to accommodate our needs without disrupting the class or endangering our child. And although this may seem simple, let me assure you that it is quite complicated and involves a lot of effort on behalf of everyone - school administration, staff, health professionals and parents. The fact is, it takes an entire community to work together to keep allergic children safe.
For my husband and I, the determining factor was the orientation day. We knew that if that day went without incident, then there is hope that our daughter could safely attend school. Unlike her previous experience in daycare, where she suffered anaphylaxis and landed in the ER shortly after starting her first day, her orientation day at school could not have been more different. I think everything went very well. She did not have an allergic reaction - not even a small hive anywhere. It was a fabulous day for us and her. We learned that there is hope that she can have a normal childhood and interact with other kids. She learned that she can be safe at school; that she can make new friends, be able to learn and play despite having food allergies. For our little family, that's a huge step. After all, we are the family that does not go out to restaurants, the ones who do not get invited to birthdays parties, the ones who are skipped over for family barbecues and the ones who don't get surprise visitors. We often feel isolated, exiled and sometimes even forgotten. The fact that our daughter was able to attend orientation day without even a hitch speaks volumes about the preparedness of the school staff.
We are still in the process of meeting to hash out a few more details. I will post updates on our progress throughout the school year. My goal is to help other families who will be preparing for this next year.
Before I wrap up this post though, I think it's important to mention a few things. Aside from allergies, I think teachers do a lot. No, really. I used to be one of those people who heard other parents complain about their kid's teacher and how she doesn't do this or does too much of that, or whatever. And I used to think, oh yeah, how horrible, because a) I did not have a child in school so I had no idea what they were talking about, and b) I never actually saw a teacher in action (from a parent's perspective). In that regard, I feel that it is absolutely necessary to shed light on the fact that most teachers are saints (or at the very least superheroes). A couple of months ago, I had the opportunity to watch a grade Primary teacher in action, for almost an entire day. I thought Maya was a handful until I saw that one teacher wrangle 26 kids. It was an eye opening experience.
This is what we do, people. We drop off our kids bright and early and hand them off to their teacher, who takes care of them and teaches them all day then we collect them in the afternoon. We feed them, play with them for a couple of hours (or ask our spouse to do it because we're otherwise busy trying to keep ahead of the darn sink that magically fills up with cups and dishes) then bathe them and put them to bed. And then we oddly start complaining about how exhausted we are after herding our kids for 3 hours. Now, compare that to the brave soul who was herding 26 super energetic, clever, sneaky, little critters from 8 in the morning till 2:30 in the afternoon. All without a sheepdog! Do we really have any idea of the amount of energy and work involved in keeping 26 children not only learning but also happy and occupied. It requires supreme strength and patience. So, on top of all that, ask that teacher to also look out for your allergic child. It is a lot to ask which is why I am so appreciative of the effort they put in. Teachers really have their jobs cut out for them.
Stay tuned for updates about our situation.
In the meantime, imagine, for just a second, that you are left in a room with 26 children, all between the ages of 4 and 5, who have various needs; imagine what it must be like to keep them in line for just one hour. What would you have to do? Now, mulitiply that by 6 hours...
I am not that brave.
One of the many things we found frustrating about daycare in general when we tried to enroll our daughter was the lack of any solid policy or even guideline with regards to food allergies and anaphylaxis. The daycare act briefly touched on the subject constituting that no child shall be discriminated against based on disability (though children with food allergies are not even considered disabled under the official definition of disability for many government organizations)
. The daycare act points out that food allergies exist and so daycares may have to accommodate children with food allergies, most likely in reference to peanut & tree nut allergies. In any case, I think daycares in this province are practically ignorant when it comes to other life threatening food allergies. That being said, there are a small number of them who acknowledge the severity of food allergies and refuse to take in children with severe allergies simply because they do not have the means to keep the child safe. I talked about all that in previous posts. So if you are still muddling through the daycare swamp, please feel free to take a look at my family's experience
. I warn you though; it's not pretty and some of the comments are just down right nasty. But you may find some of it helpful.
Moving on to school... perhaps one of the main differences between public school and daycare is the fact that public education is available to everyone. Every child has the right to an education in public school and every child has the right to be safe in school. Unlike daycare, public schools do not have paying customers. They may have strong PTAs and uncooperative parents (that could very easily make your life a living hell if they wish to)
but public schools cannot deny your child the right to an education. Daycare on the other hand, is allowed to tell you that staff "cannot handle your child" or that your child's presence "requires too much work and is inconveniencing everyone". Daycare can also tell you that they have no spot (even when you know the spot is still available because you just talked to a mom who said she got the call two days ago for the same spot, the very same one you got the call about three days ago to tell you it was gone)
and they can simply choose to accept a child based on his/her disability. They accept a child that comes with funding. It sounds like discrimination but unfortunately under the daycare act, it is not. They can choose a child with autism for example, because that child would most likely be getting funding from the province, whereas a child with food allergies is not. But I'm not going to ramble on about daycare. I've ranted about this subject till I turned blue in the face. Today I want to talk about schools, because I have good news.
Last year, something very important (and massive, and huge, and I have no idea why this was not publicized or hyped up)
happened in the public school arena. You probably already knew that the Halifax Regional School Board had long established an anaphylaxis policy, which was not as extensive as school boards in other provinces but at least it was a step in the right direction (or left, or backwards if you actually read the policy)
. The HRSB (aka Halifax Regional School Board. I'm so getting tired of typing the whole name so I'm just gonna use acronyms, k?)
adopted a life threatening allergies policy
that was basically divided into two small sections (and I mean small, as in short, vague, unfocused, non committal and shorter than the word 'short')
It included a policy section, which was one paragraph long and a procedure section that had several sub sections. Each of those sub sections outlined responsibilities of the school principal, classroom teacher, parents/guardians of the allergic child, and the allergic child. The part involving the staff was particularly lacking in identifying the responsibilities of the teacher given that the classroom teacher is possibly the one staff member who will be directly involved with your child and has the most contact with him/her throughout the day. Perhaps someone at the time thought they were doing us a favor by even considering to adopt a life threatening allergies policy. In my opinion, the old policy, in no way shape or form, addressed even the most minor of concerns to parents of food allergic children.
In March 2011, things changed dramatically, and to the better in my opinion. The old policy was revised and an updated version
was created. There's always room for improvement but still, the efforts put forth by the parties involved are commendable and appreciated. The changes to the policy are substantial and include a much more detailed description of the responsibilities of all the different parties involved as well as a clear reference to the policy framework. The entire document is comprised of two sections, policy and procedures, each outlined in further detail with additional sub sections discussing various aspects of the policy. Let me summarize them for you (because I'm that kind of person, giving and sharing in every way, in sickness and in health as they say)
This Policy section is just an intro but it does three very important things. It outlines the main principles of the policy, the framework it's based on, and last but not least, authorizes the development and implementation of procedures that may support the policy. The policy acknowledges that HRSB (and by extension all schools under their jurisdiction)
will maximize the safety of children with life threatening food allergies (i.e. you will no longer be given lame excuses such as "we can't handle your child")
. That acknowledgement by default recognizes that anaphylaxis is a serious condition that poses safety concerns if certain procedures are not put it place to protect the child.
The policy also highlights the holy trinity of allergies and anaphylaxis: information & awareness, avoidance, and emergency response. That means no more contemplating whether to call 911 or "just wait for it to pass" and also means that it is not unreasonable to request a one on one meeting with staff who will be dealing with your child to talk to them about your child's allergies and safety. It also means that the classroom teacher cannot force your child to participate in any activity involving food that may pose a risk to your child's safety. More importantly, it clearly identifies that managing anaphylaxis is a group effort that involves not only parents and caregivers of an allergic child but also school staff, other parents and the entire school community. This is something that was totally absent in the old policy, adopted in 1997. (After 13 years, someone decided that it was time... better late than never!)
The Procedures section is broken out into six different parts. Each outlines in detail the responsibilities of the respective parties and guidelines on what to do in the event of an allergic reaction. One of the key points in this section is the determination to review the entire policy every three years. That is a huge step forward. It indicates that there is an understanding that things change and what may have worked in the past may no longer work in the present. It gives the policy some flexibility to adjust to any number of changing conditions, something that was also missed in the old policy.
The meat of the policy though, is in the outlined responsibilities of all the parties involved. Those include the principal, school staff, parents of the allergic child, and the allergic child him/herself. The principal has the most autonomy and a broad range of authorization to do whatever he/she deems necessary to keep the allergic child safe within the school environment. That means that you no longer have to fight with the teacher to make the classroom food free. Decisions such as having all children eat in the cafeteria as opposed to the classroom for example, are things within the purview of the principal. What's new in the policy is the requirement to post names and pictures of students with an Anaphylaxis Emergency Plan attached to their file. The old policy required that the principal post "allergy alert forms" which is a very general and non specific term. That could be anything - a form with the student's name and allergy on it or just a piece of paper that says peanut allergy in classroom A. The new policy identifies that it is a plan specific to each child who has an allergy and that it must be readily available at the office and staff room in case of emergency. The principal also is required to notify the parents immediately if it is discovered that their child does not have his/her auto-injector.
The staff section was also expanded to include important matters such as ensuring that there are steps in place to protect an allergic child during classroom celebrations and events. Staff also are required to notify parents of the allergic child when classroom activities involve food. The policy also states that staff need to take into account food allergies when purchasing or using supplies and materials for class activities. That means that for a child who is severely allergic to milk, the classroom teacher is going to have to use something other than the famous goldfish crackers (doused in cheese)
to teach students how to count. Even if the child will not be eating the crackers, he/she will still not be able to touch them without risking an allergic reaction or touch any other students who handled the crackers (otherwise known as cross contamination in our fun filled world of allergies)
The section about parent and child responsibilities has also been expanded. Of note is the fact that the old policy stated that the allergic child must know how to use an auto-injector, without stipulating that children under 7 cannot be expected to use the injector properly even if, in theory, they know how. The new policy clearly points out that children under 7 are not expected to inject themselves and so the responsibility falls onto the staff.
In addition, the new policy includes an appendix that lists the definitions of several key words related to allergies and anaphylaxis, such as allergen, epinephrine and auto injector. This is a brilliant idea and it makes total sense. Given the sheer number of people who assume my daughter is simply "lactose intolerant" when I mention that she is allergic to dairy, why on earth would we expect them to know the meaning of the medical terms we commonly use in reference to allergies, especially when we've had to learn all those terms ourselves, out of necessity? Last but not least, the new policy also includes a copy of what the Emergency Anaphylaxis Plan looks like.
In short, the updated policy is more clear and precise about the functions and responsibilities of the parents, child and school. It may not seem like much because it's all on paper but for us, this is huge progress, one that we welcome with open arms.Click here to see the 1997 Life Threatening Allergies Policy (the old policy)Click here for the 2011 Life Threatening Allergies Policy (updated version)
You may also be interested in the Severe Medical Conditions Policy
, which forms part of the framework of the Updated Life Threatening Allergies Policy.
We are still embarking on this school journey/adventure/nightmare and in doing so we will be learning new things which I will make sure to pass along to you. In theory, the policy sounds very good. In practice, the functionality remains to be seen. I'm crossing my fingers and toes!
I was recently interviewed by the editor of Together Family Magazine, a publication distributed in daycares nationally. The article, "Living Allergic", focused on what it's like to live with food allergies and anaphylaxis. Overall, the interview went very well. It was nice to see our concerns are being taken seriously. I hope this creates more awareness about allergies and anaphylaxis in daycares across the country.
So I was finally able to get the low down on the menu approval system for daycares. To get to the bottom of things, I had to pressure directors to give me a reason for rejecting Maya. Ninety percent of the time the reason they gave was the fact that they would feel safer if they could eliminate dairy products from their menu for that classroom, but that Public Health Services would not approve the menu unless it had milk in it. Thus the problem.
Last week, I had a conversation with one of the nutritionists at Public Health - the people responsible for approving daycare menus. She informed me that there is no such mandate that dictates milk must be present in the menu unless it's for children under 2 whereby that is indeed the case. However, for children over 2 (i.e. toddlers and preschoolers) there should be no reason why the daycare cannot replace milk/dairy items with things that contain the same nutritional values. She also said that they work with some daycares to help adjust the menu to accommodate lack of dairy and that it has been done successfully before.
It's baffling as to why daycares are reluctant to implement something that they suggested in the first place. I do not ask daycares to ban milk, eggs, or otherwise, but there have been daycares that said they would feel more comfortable if they banned dairy. These are daycares that already eliminated nuts/peanuts, as well as eggs, from their menu. Many of the daycares I've visited have banned eggs from the entire centre for the sake of one child, yet when it comes to milk, they will not do the same for my child. I am confused as to why daycares would not simply replace dairy with soy derivatives that are already fortified with all the nutrients available in dairy products.
In the past year, more than one daycare has mentioned that they think it's "unfair for the rest of the kids" to ban milk from the menu. Yet, they do not think it's unfair to ban eggs, peanuts, or sesame for the sake of one child. What's really unfair is that my daughter's life is put in danger because someone else would be happier consuming what's poison to her. My little girl is not allergic to sesame or wheat, but I had no problem with daycares that eliminated both of those foods. It's perfectly acceptable for her not to eat wheat or sesame if it means another child will be safe. She can eat those items at home. It's a small price to pay to make sure that children are safe.
Is my child less worthy than those kids? I don't ask these daycares to ban any food items because I prefer education about cross contamination over banning, but if those daycares are the ones pushing to eliminate the item, what right do they have to decide that my daughter's safety is worth less than the safety of other kids? This, in and of itself is discrimination. It's simple; I believe any allergic child's safety is worth more than the convenience of eating an allergen. With that in mind, I believe any daycare that thinks otherwise has no business being in the child care industry.
I have become increasingly annoyed and frustrated by the lack of support for children with life threatening food allergies. I've developed a lot of resentment, specifically towards family and friends who continue to disregard my daughter's safety and particularly the ones who seek to exclude her from family events by making sure that the place is unsafe for her to be present.I am astounded by the number of daycares I've contacted who rejected my child because "her allergies are too severe" or because "they have other kids that demand their attention". I have talked to almost every daycare in our city, and the ones who have spots available, are not interested in taking in a child with severe food allergies. Some daycares accepted her but were unable to keep her safe. Others accepted her for a short duration and kept her safe but then kicked her out because "she was too much work".
I am equally frustrated by the number of allergy organizations out there that claim they seek to improve the lives of allergic Canadians. The AAIA, which holds itself in a position of dispensing accurate information about allergies and asthma, has failed to answer my questions about the status of allergic children under the Disability Act and programs for special needs children. They really haven't done much to improve my quality of life nor that of my daughter's except for providing me with some allergy brochures. The only organization in Canada that seems like it is actually trying to make headway for allergic individuals is Anaphylaxis Canada. They still were unable to answer my questions, but at least they put the effort in trying to research the information with me. The information they provided was not very useful and led to a lot of dead ends, but they get credit for trying. Both the AAIA and Anaphylaxis Canada suggested a number of ideas until I stated I live in Nova Scotia. There is a fair bit of support in other provinces such as Ontario, but when it comes to places like Nova Scotia, we live in the dark. Equally stupified, are the people at Community Services, who interpret the letter of the law when it comes to allergic children. My little girl, who lives with severe life-threatening allergies to dairy, eggs, and peanuts, is not covered under the disability act of Nova Scotia, because a) she is not mentally challenged and does not have an intellectual disability (yes, those were their words) and b) she does not have a physical disability in the sense that a body part is non functional or partially functional In short, they think she is a special needs child but the law does not allow for any type of accommodation under that specific criteria. There apparently is some sort of dispensation process that is available only to daycares who wish to take in kids with special needs, but it's done on a case by case basis. The application process and use of the funds are determined solely by the child care centre. The funding is not specific to any one child or diagnosis, i.e. if the child were to move to a new daycare centre, the funding remains with the old daycare centre. In other words, the day care centre decides how and when to use those funds and for whom.
With the exception of one or two, daycares in Nova Scotia are unequipped to handle allergic children, and those that are, do not understand the nature of allergies and cross contamination. I am told that Ontario had the same problem a few years ago, and was not interested in putting the effort to keep allergic children safe. But Sabrina Shannon changed all that, for Ontario. I'm afraid that things in Nova Scotia will follow a similar course and will only change if someone dies of anaphylaxis.I just hope it's not my daughter.
I am amazed by the number of people who do not understand the nature of allergies. It's a growing disease today, and is evolving very fast. Yet, people have no clue. For example, take that new daycare that we tried out this morning. You would think that when a parent mentions food allergies, pet allergies, and asthma, that people would clue in to the fact that just because the cat spends most of it's time upstairs, does not mean that dander is not around the house.
What is dander? According to Wikipedia (my new bible), "dander is material shed from the body of various animals, similar to dandruff or pet pollen. It may contain scales of dried skin and hair, or feathers. It is a frequent cause of allergies in humans." Contrary to popular belief, pet hair is not what causes allergies; it's dander, i.e. the dead skin that flakes off of the body of animals. Dander is usually very small, fluffy and cannot be seen by the naked eye. It spreads throughout the atmosphere and gets transported on virtually everything.
Dander particles shed from pets can stay airborne for hours, and in the case of cats, for months. The allergens in dander stick to clothing, and remain in carpets, mattresses and furniture even with meticulous cleaning. Therefore, someone with pet allergies can suffer from symptoms for months, despite pets having been removed from the home. In many cases, it's the person who has to abandon the place. Obviously, that new daycare is no longer an option for us - cat stays, Maya goes.
With cats, it's even more of a problem because cat dander is not only in their fur, but also their saliva and urine. How does a cat clean itself? Yes, you got it. It licks itself clean and then jumps on your sofa, leaving all that residue of sticky saliva and dander together. Your allergic child decides to sit on the sofa, and moments later, itches at her eyes and sneezes.
Anti-histamine to the rescue...
Previously, I'd posted two articles about discrimination and our personal experience with several daycares. This is a sequel to those posts. Some people have suggested that I not include names of facilities or individuals. That may have been acceptable initially, but after contacting several daycares, and experiencing some, I think parents of allergic children have the right to know which daycares are safe and which ones aren't even if those daycares claim to be safe.
Since the incident at Wee Care, and after speaking to the allergist, we all agreed that a home based daycare would be a more suitable environment for Maya because the number of children would be more managable than a bigger daycare. For the past few months we've been fortunate to have one of the best babysitters I've seen. Maya flourished in her care. She came to our house and was extremely cautious about bringing unsafe foods. We felt at ease with her and she truly understood how dangerous allergies can be. I provided all the meals and snacks; this was the only way to keep Maya safe. Sadly, this wonderful babysitter's services are no longer an option. We knew from the start that she would only be available for a few months and she'd given notice last week. She was incredibly nice to us and even helped us find the current daycare we are working with. But it didn't start out that way. It took a while before we found someone who was willing to accept Maya into their daycare.
Our first contact was with Future Stars Learning Centre and they accepted Maya initially but with some trepidation (perhaps that's a lesson in and of itself). Despite that, Maya did very well. She was safe and we did not even have to give her any antihistamine. I provided all her meals and snacks. I provided all her gear and medication. I only asked that the staff make sure other kids clean their hands after consuming food that Maya is allergic to. To my disappointment, I got a call from the director a few days later. She asked me NOT to bring my child in again. I was informed that they could not keep Maya safe because they will be taking care of an autistic child. They did not think that they could manage an autistic child as well as Maya while making sure that other kids washed their hands after food. The director stated that the autistic child required a lot of attention and she did not have the necessary staff to handle all that. It seemed to me like Maya was being kicked out because they thought it was easier to take care of an autistic child. I was furious. What makes one special needs kid favourable over another? Perhaps in this case it was funding. But it didn't matter, the reality was, they had no desire to make it work. It was evident that the issue was not understaffing. The next day I found an ad online for the spot that my daughter had occupied. Upon further investigation, I discovered that the place would have been totally unsafe for Maya, as that autistic child needed to have his milk bottle with him at ALL times, and so the director could not keep the place clean. He's over 2 but his bottle is what soothes him and he needs to have it. I understand that; he's autistic. However, Maya was in the daycare before this information came to light. I felt that as opposed to make it work, the director chose to simply eliminate the option that seemed like too much hassle. In retrospect, someone who thinks of a child as a burden or hassle is probably not someone you want dealing with allergies and anaphylaxis.
Since then I've contacted other licensed home based daycare facilities. Some were very apologetic and said that their families consume allergens everywhere in the house; they felt it would be unsafe for Maya. Some took the opportunity to educate me on being a good mother by suggesting that I should not be looking for daycare at all and that I should take care of my child myself, which begs the question why are these people in the daycare business to begin with. One woman even yelled "Not Interested" and hung up on me as soon as I mentioned that my daughter has severe food allergies. Still, others marveled at our ability to keep Maya safe with such severe contact allergies and wondered what we'll do when she goes to school. Amongst all that, we managed to find one home based daycare run by a very friendly woman. She agreed to take in Maya and expressed that it's no problem at all to work with us to keep her safe. She seemed a lot more accommodating than most. We quickly realized why. Her neice and nephew are allergic to peanuts, and she's had to administer the epipen to one of them before. Once again, the people who are sympathetic towards allergic individuals are ones that live with anaphylaxis themselves or their loved ones. We start that new daycare tomorrow; we hope it works out. I will be posting about our initial experience within the next week so stay tuned.
Two years ago, I read an article about discrimination in daycare against children with allergies. I worried but I thought that by the time my little girl is two, things will have changed. Sadly, they haven't. Now that we are in the process of looking for daycares once again, we are bombarded with the same level of rejection. When the daycare staff discover that Maya has multiple food allergies which include milk, they tell me that they do not have the space. A few of them choose the more direct route and tell me that with Maya in their care the teachers would be too stressed to look after a child with severe allergies as well as other children. I can understand this type of rejection if I was asking those places to ban milk completely, but I am not. I am simply asking them to prevent cross contamination. Unfortunately, most daycares don't seem to understand what cross contamination is let alone how to prevent it.
In our last visit to the Allergy Clinic, the allergist suggested that a home-based (smaller) daycare is most likely a more suitable environment for Maya due to her multiple allergies. He seemed to think that in a smaller setting, cross contamination would be easier to prevent. I shared that opinion with him, until I visited a few of those home based daycares. Indeed they are smaller; small enough that all children sit at one or two tables and Maya would be seated next to someone consuming milk products, where spills would lead to cross contamination. Toys don't get cleaned that often either. We have gone down that road before with the previous daycare. Maya was seated at a separate table and still cross contamination was an issue.
I am constantly amazed by how the government boasts that our children are protected against discrimination and yet there is evidence to the contrary. It is true that daycares are breaking the law when they single out one child because of allergies and refuse to take her in. On the other hand, I think the severe lack of awareness out there is a primary cause of this discrimination. People who have a limited understanding of allergies often think in terms of black and white. In other words, they find it less stressful to ban the allergen rather than reduce cross contamination. Hence, the peanut free policies everywhere. I believe this is why banning ultimately fails. By banning the item, it becomes unnecessary to implement measures against cross contamination. However, this gives a false sense of security, because in reality, no one can ban an allergen consistently. There will always be the parent who forgot and put a peanut butter sandwich in their kid's lunchbox, or the one who sent their son to school with a granola bar that contained nuts. And even if the parents are conscientious, some kids will neglect to wash their hands and mouth after consuming peanut butter. Banning an allergen in a small setting may work temporarily, but in a larger setting, things are more complex and harder to control. You can control what 10 parents bring in to a home daycare, but you cannot control what 75 parents bring in to a big daycare centre. In our case, Maya is allergic to milk, eggs, and peanuts. As much as I would love the peace of mind that banning milk, eggs, and peanuts would give me, I would worry more about what would happen if someone accidentally brought it in while there are no measures to reduce cross contamination. So after much thought, I still believe that reducing exposure through prevention of cross contamination is the answer as opposed to banning.
Those who cannot ban the item prefer to ban the allergic child instead. Removing milk from daycare menus and school cafeterias is almost impossible. Some parents strongly believe that if their child does not consume milk they he or she will die of malnutrition. Regardless of the reasons, milk is a food item that is widely popular and so there is always a swift and extreme response when even a suggestion is made with regards to milk. The dilemma in daycares is twofold. On the one hand, parents of other children demand that their kids drink nothing but milk while in daycare, and in many cases that fuels the "us versus them" attitude which banning introduces. On the other hand, daycare staff finds it too much work to try and reduce cross contamination, and that is because there is no federal or even provincial mandate that urges them to do so. This is why I wholeheartedly believe and support Sabrina's Law. It dictates that every school have an anaphylaxis policy in place. In addition, one of the contents of the policy is that it include "Strategies that reduce the risk of exposure to anaphylactic causative agents in classrooms and common school areas". Once again, the law is not actually banning the allergen, but it sets the expectation that it is the responsibility of school staff to reduce cross contamination. When a request becomes a law, people tend to be more attentive to it.
Daycares seem to think that they have a choice when it comes to accepting a child with allergies. You don't often hear of a child being rejected from daycare because he's autistic, or has cerebral palsy. Those children are protected under the disabilities act, whereas children with allergies are not. Last month I put in some phone calls to several government departments inquiring about that very thing. The answers were vague and ambiguous. Other than Sabrina's Law, there is no definite law, that I know of, which protects children with allergies. In fact, the different departments I spoke to, were not even sure if children with allergies are protected under the umbrella of the disabilities act because allergies are not seen as a disability. Currently, daycares are more than willing to accommodate children with peanut allergies. Most daycares and schools are now practically peanut and nut free. Why is it easier to accept a child with a peanut allergy, yet reject one with a milk allergy? Perhaps because it's easier to ban than to work on reducing cross contamination. However, to me that implies that neither child's life is worthy of the effort, and that is simply unacceptable.
What do you think?
I've had several people inquire about my family's experience with daycare after hearing about the incident with Maya. In my emails I promised that I would publish a post about our experience. We are disappointed that it did not work out partly because that was the only daycare that agreed to accept Maya apart from one other that had no slots available. Most other daycare centres refused to take her in because of her multiple and severe allergies. She is anaphylactic to milk, eggs, and peanuts through ingestion and contact. The purpose of this article is meant to help prepare parents for the process of daycare in relation to severe allergies. It's not meant to be inflammatory or damaging to daycares in general nor to that particular daycare, rather a glimpse of what we, the parents of allergic children, are up against. This post is simply an account of the events that took place and why, in my opinion, things turned out the way they did. The following is a summary of the events that took place. For tips on how to ensure your child's safety in daycare please click here.
The incident that prompted us to pull Maya out of Wee Care Development Centre
On October 7, 2009 at 9:30 Maya went into anaphylactic shock at the daycare centre. Her teacher administered the EpiPen and called 911. By the time the paramedics arrived the symptoms had subsided and Maya was looking fine. They transported her to the IWK Emergency and we met them there. Maya's vitals were all checked and everything appeared normal, but the doctor decided to keep us there for observation. An hour later Maya's symptoms returned and within 15 minutes her body went into anaphylaxis again. She was given another dose of epinephrine and additional potent drugs to keep her system in check. For the next week, she was quite ill and symptoms of her allergy kept manifesting every day. The doctors had predicted that this may happen so we were instructed to continue giving her histamine blockers for several days. At this point, Maya is no longer exhibiting symptoms. I believe she has finally recovered. Her father and I are thankful.
Why it did not work for our family
Although we provided each staff member in the daycare with a package about allergies, I discovered very quickly that the majority of them just leafed through it and did not actually read it. Examples of that included, but were not limited to, storing Maya's soy milk in the fridge adjacent to the cow's milk cartons where there was milk residue even on the shelf. The teachers touched the contaminated soy container and gave it to Maya. They would then touch the food, so that Maya's hands and her food had traces of milk residue. She would have a reaction after incidents like those. That is the type of stuff I talked about in the session and I cited that example in fact, and also noted it in the documents. I explained to them how our fridge at home is segmented to keep Maya's food safe. Despite that, there was no care taken when placing her items in the fridge. I provided them with big plastic containers that contain Maya's safe food, and requested that all her food remain in those containers. Yet after the incident, I discovered that her food would come out of the box and would be put on the fridge shelves unsealed, where it could come in contact with other allergens.
Many of the teachers in the other classes did not put the effort to make sure Maya is safe. They did not wash the hands and faces of children after food, and on a number of times Maya would have an allergic reaction after one of the kids touched her hands or touched a toy she was playing with. Instead of ensuring that teachers follow the protocol to wash all hands and face, the staff decided it was easier to eliminate playtime with the other class altogether.
One thing that really bothered me was the clear delineation between job functions and the shirking of responsibility when it came to food. Maya's teachers were unwilling to read labels. They refused on the premise that it would consume too much of their time, thus leaving the entire responsibility on the shoulders of the cook who sometimes missed things because she is only in part time and cooks the meals for all the classes. On one of those days, Maya was fed chicken pot pie which contained Cream of Mushroom soup as one of the main ingredients. The label on the container clearly stated cream (contains milk protein). Maya had a reaction. Additionally, on that day the cook had neglected to mention that particular ingredient. We had an understanding that I would inspect all ingredients but on that day she decided to try something different. For the remainder of Maya's time in that daycare my husband and I came in early in the morning and each of us took turns inspecting the labels on all the food for that day.
In times when Maya had allergic reactions there was never an informed point of contact. I had to run around after the fact to get the details of what had actually happened. Several times, the teacher who was responsible for being the point of contact had finished her shift and went home without relaying the information to anyone else. I often found resistance the next morning when getting additional information as the teachers would be busy with the other kids. In the two times the paramedics were called, when I asked what happened, the teacher notifying me on the phone would state "I don't know". The person calling to tell me that 911 had been called was unable to tell me exactly what happened to my daughter, and that someone else had that information.
Although we provided the staff with the Allergic Reaction Review Form, it was seldom used. I had to have a meeting with the director to force the staff to fill out the forms, and after the fact I encountered some resentment. The teachers saw it as a demanding attitude and did not think it was necessary for them to fill it out. They preferred if I wait till the next day and gather the information myself.
Maya was constantly getting hives after playing with the toys. When I discussed it with her teachers I was told that they could not wash the toys everyday nor keep Maya away from them. They said that the best they could do was wipe her hands down after she played with them. This was an unacceptable solution for us. To me that indicated that they are still not aware of how allergic reactions work, that the reaction may not be as severe or mild as the one before even if exposed to the same allergen in the same amount. Another meeting with the director made sure that the teachers understood that toys had to be cleaned before Maya played with them.
Often when we spoke to one teacher about something, it never made its way to the other teachers. There was a visible communication breakdown even between the cook and the teachers. On more than one occasion Maya would end up missing her afternoon snack or given something insubstantial because the teachers were not sure if her food was safe. Since the cook was part time, she made sure to tell one of the teachers that Maya's food was safe, but because that teacher's shift ended at 2:00, she went home without telling anyone else about her communication with the cook. It made me wonder about the times when the food was unsafe but no one was told otherwise.
The staff demonstrated that they still did not understand the dangers of cross contamination when they used dates to make date squares. Maya reacted after eating a piece. Upon inspection I discovered that the date container came from Iran. It was produced, packaged, and inspected by a company in Iran. The container itself did not have a list of ingredients, and the writing on it was not in English or French, rather in Persian. Although I had explained to the staff in our first session that unlabeled food is unsafe for Maya, no one took the time to ensure that the ingredients were properly labelled.
The staff also did not understand that trace amounts of an allergen are just as dangerous as large amounts. On one occasion I was told that the kids would be having hummus (chickpea dip) that day. Upon inspecting the ingredients I discovered that the sesame seed paste (tahini) label clearly stated may contain traces of peanuts and nut ingredients. That is despite the fact that the daycare claims to be peanut free in their policy and guideline manual.
On more than one occasion a number of teachers commented on how grateful they were that her allergist and I decided to give Maya Reactine every time she came to daycare because then they didn't have to worry about her reactions. They thought that if Reactine was administered before an allergic reaction that it would prevent the reaction from progressing to anaphylaxis if she was exposed to milk.
I tried to have another session about allergies with the staff, just as a refresher course, but encountered resistance. I was told that they are all busy and that their schedules are hard to manage. The director could not get them to agree on any set time because they were not paid for being there for the session. The director would not pay them to stay for an extra hour, and the teachers were not interested in sticking around after their shifts.
Parents of other children were particularly difficult to convince about allergies. We attempted to get 25 parents to our allergy session. Only two signed up, one of them had a child with allergies. The rest were not even interested in talking to me. Some of the parents complained about our demands and declared that if it doesn't affect their child then they are not interested in learning about it. One parent in particular scolded the director and stated that he would not read or sign anything without his lawyer being present.
The responsibility of caring for an allergic child rattled some teachers. I remember one of the teachers responded to me with panic when I mentioned that Maya needs to take her puffer because she has a cold. She interrupted me midsentence and said that she cannot be with Maya on her own and is not responsible for giving her any medication and that I would have to find one of Maya's other teachers to take care of that. One other teacher in particular did everything she could to exclude Maya from all the celebrations. Some of her insensitive remarks included, but were not limited to, the claim that they had to change the date of the Thanksgiving party to a day when Maya is not there because they just can't take care of her. The same teacher approached me at another time about the Christmas party and demanded that Maya not be there on that day. She told my husband and I that if Maya really had to be there that they would rather she come for a brief visit to see Santa and then leave. I eventually approached the director about this because I had discussed it when we first enrolled Maya in daycare and she assured me that they would be working something out to keep Maya safe, and that such conversation between her and the teacher never took place. Either way, there was resentment and reluctance on the part of that teacher when it came to Maya.
In general, Maya was regarded as a monster that was going to explode at any moment. Her teachers were very worried around her all the time. They were all afraid of the responsibility, and it ceased to be about Maya very early on. Most of her teachers were thinking about what the legal implications were for them if she got sick during their care. When Maya had a reaction, often blame was assigned to the cook directly and indirectly. Teachers were more than willing to point the finger at the cook rather than look at what they were doing to prevent cross contamination. The general attitude was that if it involved food then it was the kitchen's domain, and because Maya's allergies were food related, they saw those allergies as an extension of the kitchen's responsibilities.
All in all, it was quickly apparent to us that the director and her assistant were absolutely on board when it came to Maya's safety. They did their best to make it work. The cook was also very accommodating. She changed whatever recipes she could to make them safe for Maya. Indeed, some things slipped through the cracks, but in all fairness, she always had the positive attitude and never made us feel like we were imposing. If I had to find fault somewhere, I would direct my attention to the teachers who did not appear to me as being a coordinated team willing to take ownership of Maya's safety while in their care. They had little confidence and refused to look beyond the scope of their classroom to create a safe environment for our daughter.
I hope that anyone who took the time to read this has gained some insight and wisdom from our experience. I did not write this with malicious intent, but only in the spirit of cooperation and support to other families living with allergies. Despite the fact that this was a traumatic experience for Maya and us, it did not deter us from searching for other daycares that might be suitable for Maya's situation. In fact, I will be meeting with potential daycares within the coming week. One of those daycares has already taken in 5 other children with severe allergies and so far has been successful in keeping them safe. It was our first choice last year but at the time they did not have a slot open for Maya. After the director heard of Maya's ordeal, she has generously invited me to meet with her to try and work something out for Maya in the near future. I will be posting about that experience as well. I look forward to it being a more positive one.Other issues worth notingEven though Wee Care Development Centre agreed to take in Maya, they clearly were unable to keep her safe. The other issues worth mentioning are strictly administrative and service oriented, but they do shed a light on the perceived accountability of the daycare staff.
- Despite their failure, the daycare director was not generous with the financials. For starters, they charged us for every single day whether Maya was present or absent. I understand that this is standard practice in the industry, but in our case there were mitigating circumstances that should have been taken into account. On some days she was only present in the daycare for the first hour because they were directly responsible for her allergic reaction that prompted calls to 911, whereby then she was transferred to the hospital.
- When we withdrew Maya from Wee Care, they initially said that they cannot refund the money because we were one week into the month and that they normally need a one month notice before any child withdrawal. After speaking to the director, she agreed to refund only two weeks of the one month payment. To me, this type of attitude suggests that the daycare staff did not feel they were responsible for causing Maya's allergic reaction.
- They suggested that I purchase one of their keycards to let myself in and out of daycare when dropping off and pick up Maya everyday. I agreed and the keycard was given to me on the same week we withdrew Maya. I had only used the keycard ONCE. Nonetheless, they refused to refund my money and gave back only a partial deposit. The whole thing was inexpensive so it's not about the money, but again, it suggests that they did not feel they did anything wrong.