I know I haven't been updating as frequently as I should so I thought I'd just write a brief summary of what's been going on at school and how the allergy situation is being dealt with. This is not going to be a detailed post. As you can imagine, things are extremely hectic right now. Everyone is exhausted, tired and overworked. I'm stretched pretty thin these days and my schedule is on the verge of imploding any time now. I will be posting in more detail about the entire process of dealing with allergies in our school but that will come later, sometime next month. I want to give the process time to see how things will progress. In the meantime things are looking very good and the future looks promising. I'm starting to sound like a fortune cookie.
I've spoken about how much work teachers put in when my husband and I had a chance to visit the school last summer. Well, this year, I volunteered to help out during the first week of school and boy was it enlightening. I won't go into details, but what I will say is that I think the teachers in this school are doing an amazing job. It's not just Maya's classroom; it's really everyone. All the teachers I've come in contact with are amazing. They work hard and are very patient. Can you keep your sanity when you're asked 29 times "are we going outside?", over and over again? Because these teachers can and they do.
I also want to stress that keeping an allergic child safe at school is not a one man job and does not involve only the teacher. It's a group effort which really only works if everyone comes together to make it happen. There is a transition that takes place from the child to the parents in the home, to the school administration, to the teacher, to the students and so on and so forth. At age 5, it's unreasonable to expect children who do not live with allergies, to understand what it's like for the allergic child. Fortunately, in Maya's class the kids are doing really well with the hand washing and are getting better at it every day.
The process that is set in place to keep our daughter and other allergic children safe is put in place by a number of people. So far the school administration has been extremely accommodating. They are willing to work with us and their concern for Maya's safety is genuine. Specifically, the Vice Principal has been on board with the plan and done her best to make sure that our daughter remains safe at school. She has been very professional and courteous, has not made me feel like I'm a crazy over protective mother, and has kept me in the loop every step of the way. I say this because my family's experience with daycare has been miserable and I am quite surprised and pleased that the attitude I encountered at school is completely different. There is great emphasis on inclusion in this school - not just the students, but the parents as well.
It's very important to note, however, that even though there is a process set it place and certain protocols that are designed to keep allergic children safe, none of it will work if it's not properly implemented in the classroom. This is where the teacher's role comes into play. In our case, we are very lucky to have Maya's teacher. She has been great. She's a real trooper. The effort she puts in to make sure that the classroom is safe and allergen friendly is enormous. No doubt she's exhausted but she has not complained. She's been friendly, accommodating and has worked with us on every request to try and keep Maya safe. Simply put, she's amazing.
Overall, things have been going well. That's not to say that everything's perfect. Every new process has a learning curve and every new system needs to run for a while before all the kinks are ironed out. And we are okay with that. There have been challenges and some minor allergic reactions, but nothing that required the use of the Epipen. Given that we are dealing with more than just peanuts, but eggs and all forms of dairy, it is unreasonable to expect a completely safe environment like our home. In that light, we think that every day the Epipen is not used, is a successful day. The school staff are trying their best and doing a good job. So far, it's only been two weeks, but a promising two weeks. And although things are going well, you know as allergy parents that we can never let our guard down about allergies, can never just relax, and must always remain vigilant for the safety of our children.
Am I losing sleep over this? You bet! Is it as bad as I thought? Definitely not. Besides, at this point, I've accepted the fact that sleep is not required; it's optional. Even if I did sleep, you know I'll still sleep with one eye open, so what's the point?
If you see some poor zombified soul wandering the streets at night it'll be me.
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.
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.
The latest development in our little family's life involves the discovery of some new allergies. Well, we had suspected but it has been confirmed. After living in a constant state of suffering and misery, we have finally figured out what my husband is allergic to: dustmites. It turns out those little buggers were responsible for his hacking cough, lack of breathing, stuffy nose and a head that feels twice as big.
On our second visit to T's allergist, I stepped outside for a minute to take my little girl to the bathroom. When we came back my poor husband had walked out of the doctor's office with one very swollen arm and a face as red as a beet. He was completely stuffed up, eyes watering and very miserable. The little marks on his arm read CRAB, LOBSTER, SHRIMP. I could see some serious hives next to all three, which later on spread and melded into one massive swollen area. It turns out he's allergic to shellfish - severely. What did the doctor call it... "profound reaction"!
He always suspected that he was allergic to lobster, but not shrimp or crab, and not like this. He had always said it was just a mild reaction; he'd get sick after eating lobster. However, after the latest allergy test we have seen the light. And to think, all those times we ate at seafood restaurants and ignored shellfish warnings on labels. Close calls! Despite this recent discovery, we are still living our life unaffected really. Maya does not even like the smell of seafood, and T never liked it anyway. I do not eat lobster or crab; never have, never will. However, I have a lot of respect for people who do. I lack the courage to put those things in my mouth. Crabs especially, very much resemble the facehuggers from Aliens. And lobsters, well, they look like a cockroach on steroids. The only thing I might miss is shrimp, but I'd miss my husband more if he had to spend half the night in the ER because of a reaction to shrimp.
Needless to say, after his profound reaction we promptly picked up an epipen. Ah, all is good in the world. Now, if only I could convince him to carry the darn thing.
Every year, Santa and his elves come to the mall. He sits on his big comfy chair, surrounded by Christmas trees and large stockings full of treats. Families gather around with their kids and people wait in line for hours to take pictures of their children sitting on Santa's lap, talking to him and receiving candy at the end of the visit. Our little girl loved this visit and looked forward to it every year. This year however, she was disappointed, and so were we.
We went to the mall as usual, and Maya was so excited to see Santa, but could not go anywhere near him. Upon arrival to the area, we noticed that there was food everywhere and chocolate smeared on the ground, pillars and the walls. Apparently, the elves were doling out candy and chocolates to the kids while they were waiting in line to visit Santa. Normally, candy was given after the visit so that parents would escort the kids away and the chocolates were eaten elsewhere. This year, kids were hopped up on candy before they even got to Santa. I'm not entirely sure if Santa and his elves came up with that brilliant idea or if upper management at the North Pole issued a corporate wide policy change. In any case, what ensued was a disappointing experience.
What would normally be an exciting time for most families, especially kids, was an absolute nightmare for us and treacherous for Maya. Navigating the mall was like walking into a minefield. Everywhere I turned there was ice cream, chocolate bars, coffee, etc. even in sitting areas that were far away from the food court. I was trying to formulate a thought in my head - how to tell Maya that she cannot visit with Santa this year, because his suit is covered in milk chocolate residue, and his chair has little hand prints of candy stains. It is sad that a child should have to understand this sort of thing at an early age but there was just no way I could put a positive spin on this one. Honey, Santa is contaminated and we can't approach him without hazardous materials suits.
As I stood in front of Santa's house, held Maya's little hand and tried to absorb the magnitude of the danger I had just exposed my child to, I spotted an elf heading our way. But instead of talking to me, he simply smiled at Maya and pulled out a box of Smarties chocolates from the bag. Innocently, Maya put out her hand to grab the seemingly harmless gift and was startled by the loud "NO!" her father and I uttered in the same breath. The whole incident took less than a second. I was holding her hand, and using my other hand to keep kids away from her (with their chocolate covered faces and hands) as well as keep Maya from touching the walls that were also covered in smears of chocolates and coffee cups parked at the corners. In the same moment, my husband dove in to yank the chocolate out of her hand and remind her that she cannot have those because she is allergic to milk. I turned around to tell the elf that she is allergic and cannot have those. We proceeded to walk away when we noticed the elf behind us again and this time he pulled out a candy cane from the bag and gave it to Maya. Again, I took it out of her hand, as she cried, and I put it away and offered her a different kind of candy that is safe while her father tried to console her.
Santa, I know that this time of year you're probably busy getting stuck in chimneys and whatnot but I'm not at all impressed with the new policy, namely giving candy to kids before their visit. I don't want to be "shoulding" all over you but you "should" have considered at the very least, those who are allergic to nuts. And let's not even talk about the logistics of that decision and the repercussions. For example, isn't it a waste of financial resources to give all the kids candy without doing the necessary research first. There is insufficient evidence to prove that all those kids were nice. I'm certain that a small portion of them were naughty and deserved nothing but reindeer droppings (or coal). Not to mention, the lack of understanding we received from your elves (and other parents who rolled their eyes at me when I stated that Maya is allergic - those parents should be receiving droppings as well, perhaps even bear droppings). Even after I told the elf that she was allergic, he proceeded to give her something else that she could be allergic to. He just assumed that she is allergic to peanuts (and she is, but she's also deathly allergic to dairy and eggs) when he could have asked what her allergies are before giving her anything else.
I'm not asking for much, Santa, just for your staff to be a little bit understanding and for upper management to be a little more creative. Santa, why give food at all? Wouldn't a little toy trinket be safer and better for everyone involved? Or simply stickers, Santa; everyone loves stickers, even adults love stickers (when they don't have to peel them off the walls, floors, sinks, and other important areas).
Santa, I have been a loyal customer (and fan) of yours for the past 30 years and I feel that this latest incident has caused me to question your motives and the entire validity of Christmas. Before making any more policy changes, please take into account all your customers, not just a portion of them. My little girl is starting to doubt your existence (she's too young I know, but she's also quite clever - and your latest stunt did not help) and is not sure if you deserve a plate of cookies this year. Please pass my concerns onto the North Pole management team. Thank you for your cooperation and I look forward to seeing you soon with plenty of toys and no food.
Twilight Zone Central
DISCLAIMER: This article is not for the faint of heart. It goes without saying that the content on this web site is based on my opinion (except comments written by others, which reflect their opinions). I am aware that I have strong opinions and I understand that not everyone will agree with these opinions, or how I choose to express them. Others may think of me as pessimistic, but I'd like to think of myself as practical. The views and opinions expressed in this article are mine and in no way reflect the views of other families living with allergies. What I write is true for me and my family and is not meant as advice, legal or medical. If you are easily depressed please do not read this article. I accept no blame for misinterpretation or misuse of the written content.
When a child is first diagnosed with an allergy typically the parents are told that the child is allergic to any X products and that strict avoidance is the only way to stay safe. That, and they are given a few pamphlets about the allergen along with a prescription for epinephrine. Some places provide epipen training but the majority don't. From what I hear, that is the extent of allergy education and information on behalf of medical professionals. At least that's the way it works in this province. After that, the responsibility falls on the shoulders of parents to find out more information through diligent and continuous research.
The process of managing multiple life threatening allergies starts off with a progression of stages that are very similar to the stages of grief if you will:
Denial - Parents are in total shock, especially if they have never been exposed to allergies or anaphylaxis previously. They don't believe this is happening to their child. They may seek a second opinion for fear that the doctor is inexperienced or made a mistake. Some will even continue to feed their child products containing the allergen in the hopes that it will "cure" the allergy.
Anger - After the initial shock wears off, parents start looking for someone to blame. Upset by everything and everyone, they start looking into their family history to deflect blame (e.g. this didn't come from MY side of the family). They do not understand why this happened to their child and sometimes feel envy towards parents with non allergic kids. That coupled with their frustration that there is no cure for allergies often creates resentment towards parents who are not familiar with the world of allergies. In many cases, parents direct the anger towards each other especially if one is still angry while the other has accepted the chain of events.
Bargaining - The parents of the allergic child start to doubt the severity of the allergy. They hope that their child can have a little bit of the allergen without reacting to it; that if they can at least have the allergen in something small that this will be okay. For some parents, eliminating the allergens and keeping reactions at bay means that their child does not have special needs and is "normal", and can pursue activities enjoyed by other children as well.
Depression - Reality begins to sink in and parents realize that their child is special, especially if there were a few close calls. They withdraw and disconnect from others for fear that they might expose their child to the allergen. Some may even cut off ties with family and friends who do not understand the nature of allergies. They realize that they cannot do the things that other non allergic families do, such as going out to restaurants, to the movies, or play dates. They inadvertently isolate their child fearing for his/her safety, particularly if friends and family are not making an effort to create a safe environment for the child. If support within the local community is limited or nonexistent, this feeling of demoralization is compounded.
Acceptance - Parents will eventually accept the dramatic change in lifestyle. Many will actively manage and deal with everyday situations through prior preparation and education. Some will become advocates for the rights of those with allergies and will dedicate all their time towards the spread of awareness and information about allergies. Others may choose to remain secluded after gathering the necessary information and take the us versus them approach.
I'm aware that there are a large number of people involved in the allergy community who would like all allergy sufferers to believe that the world is a great place and that life, although altered, is still pretty much the same. They would have you believe that support is on every corner and that you're not alone. Perhaps that is true for some, but I would much rather have someone give me all the facts, good and bad, as opposed to only some of the facts. When you first stumble unto a support group, there is this sense of belonging and euphoria, if you will. It's almost like a drug high; it feels good while it lasts but then you come crashing afterward when you discover that all is not well. I think newly diagnosed (and seasoned) families may be interested in a different point of view. This article does not include "good news" - you can get that anywhere. There are plenty of people, web sites, books, and other venues that focus on nothing but the positives in the world of allergies. The food allergy battle may very well be a victorious one (someday), but this piece is about what takes place in the trenches. This is about one family's experience but try to think of it as part of the big picture. This is what I see when I take off those pink tinted glasses, and stop viewing the world through a field of roses:
- No one cares more about your child than you. Your child's survival depends on you, the parent, not the doctor, not the babysitter, not family, not school, and not friends. You will meet people in personal and professional capacities who will come across as sincere but really their underlying motivation will often stem from self preservation and their fear of causing harm to your child. They are afraid of the liability and so refuse to be responsible for your child. That means daycare, babysitters, as well as family and friends. Do not be surprised if even your closest family members refuse to babysit your child or show no interest in easing your hardship. Ultimately, it is their best interest that they're looking after, not your child's.
- Support is not available on every corner, not in this province. Perhaps larger provinces may have support for those living with anaphylaxis, but in small provinces things are quite different. At first, you will be inclined to move to a different country, where laws are more accommodating to those living with allergies and where education and awareness is more prevalent. Then you will come to the realization that this is not going to work for various reasons. Allergy organizations have their own agendas and work on things according to their convenience and set of priorities which may not match yours.
- Get in the habit of hoping for the best and preparing for the worst. Most people are selfish, ignorant and suffer from tunnel vision. They have no desire to educate themselves on matters that do not have a direct impact on their life, even if their actions negatively affect others. Our actions are inherently self serving, even those that relate to our offspring such as protecting and providing for our children. Its purpose is to ensure the survival of our species, and to increase our share of the genetic "market" as it were. From a logical point of view, it makes total sense yet seems oddly disturbing. This is a philosophical discussion that perhaps belongs to another time. Nonetheless, what it boils down to is that for every one person who genuinely cares, you are likely to find 99 other people who just don't give a s**t.
- Get accustomed to being ignored and let it roll off your back. Generally, people will not respond to your emails and will not return your calls (even within the allergy community). It's part of the process. You are unimportant and a nuisance to them and not someone they want to deal with. Expect ignorance and callousness. I've had daycare staff yell at me when I called to inquire about whether they take in kids with allergies. These are people I have not met or spoken to before, but as soon as they hear of severe food allergies they loudly bark at me "NOT INTERESTED!" and hang up. It's not personal; it's a liability issue to them.
- Get with the program. Your child has special needs just like any other kid with a special need. If there is funding for special needs children, your child will be at the low end of the totem pole. If there are any special circumstances or accommodations for people with disabilities or special needs your child will not qualify because allergies are not seen as a disability. Even with government and institutional programs, your child will not be accommodated due to allergies. Take the CRA's decision to grant Gluten allergic individuals the ability to claim their gluten free foods under medical expenses. A child who is diagnosed with Celiac Disease can claim that expense, because according to the CRA, gluten free foods are hard to find and expensive and that creates undue hardship for the family. Yet, a child with a life threatening allergy to wheat and barley for example, cannot claim that expense, even though they buy the same gluten free food, and in fact if they were to consume those gluten foods they would suffer anaphylaxis.
- Do not be surprised when parents of non allergic children take it upon themselves to educate you on proper parenting skills and what constitutes neglect. I've met many parents along the way who believe that I should be staying at home with my child and was even told flat out by one parent that I "should not let my daughter out of the house because of her allergies." Most parents will judge you, and some of them will be parents of allergic kids. Some parents expect you to quit your job and stay at home with your allergic child yet somehow still manage to magically make money. Those are the same people that send their child to school sick because they could not afford to take a day off work.
- It's going to be shocking at first but get used to the fact that within the allergy community there is a multi-tiered system for allergies. It's not deliberate (though some might argue otherwise) but it's definitely present. Often children with only peanut allergies get preferential treatment. If an issue about peanut allergy arises, allergy organizations will gather and rally for support and advocacy. Any other allergy is parked on the sidelines. Many parents of peanut allergic children will tell you that peanut butter is especially hard to clean because it clings to everything and that is why banning it is a necessity. I beg to differ. Try wiping margarine off a surface without thoroughly soaping it. To a child with a severe milk allergy, dairy margarine is as poisonous as it gets. Yet parents, even ones with peanut allergic children, will be the first in line to protest if you even hint at banning milk products, and in that they have the backing of allergy organizations.- You will be exposed to all sorts of theories and ideas out there. There will always be one excuse after another for the reason why one allergy is treated different than another. You will commonly hear that peanut allergic families for example, have been fighting the allergy battle for a lot longer than other allergies and that is why they got what they have today, that this somehow justifies the type of preferential treatment they get. And you will keep hearing that, even though your child is also allergic to peanuts, yet they speak to you like an outsider, like your allergies don't fall under the same category. Most people are often just confused and misunderstand your intentions: that ALL allergy sufferers be treated equally.
- As frustrating and offensive as it sounds, expect to be asked for photos. Get in the habit of taking pictures of every reaction and documenting in detail what you think led to the reaction and what medication was administered. Doctors will not trust your judgment or assessment of the situation. You don't have a medical degree and so they are inclined to believe that when it comes to allergies, you are either paranoid, exaggerating, or misunderstand the facts. Often, they do not see the reaction when it happens. They believe that you believe what you say is true but they will require proof to make an accurate assessment. That being said, do not take these people for granted. They work long and hard to make life better for you and your child. They see a lot of patients and because allergies are on the rise it's no surprise that they are diagnosing new patients every day. They may not be able to give you the time of day, but they often work very hard behind the scenes to advance the allergy cause.- Expect to hear nasty and unkind remarks about your child and their condition. You will be told that your child is a genetic anomaly that was never meant to develop into a human being, that survival of the fittest ensures our species remains strong by weeding out the weak and that by catering and protecting children with allergies we are allowing genetic defects to run rampant within our species thereby weakening it and diluting the strong genetic code. Do not let it bother you. Those people change their mind as soon as they get sick.- Do not be surprised if your child is labeled. I've seen (and heard) a number of people refer to my child in terms other than her name. I've heard a teacher call her "heat rash girl", and several friends and babysitters have referred to her as "allergy girl". Those are just a few of the things that have been said to her face. Do not let it bother you especially in front of your child. You don't want her to in any way perceive that she is a burden, because she is not.
- You will meet at least one or two allergy parents who will see the silver lining in everything. They will be the ones who will be able to put a positive spin on even the most terrible of events. They will encourage you to learn from your mistakes and will try to find something positive in the negative. They can have very valuable advice and they are often very nice people, but be aware, they have been doing this longer than you and have acquired a bit of a thick skin. It's not that they don't care or aren't listening. On the contrary, they most likely understand exactly what you are going through because they have been there too, but this is their way of coping with the bad stuff.
- Do not underestimate the power of the world wide web. I have gotten more information and support from internet sites such as Allergic Living's forum for example, as opposed to local support groups and official allergy organizations. You can reach a much wider group of people who have been exposed to many things in the allergy community and there is a wealth of information on allergy forums and other allergy sites. Pay special attention to blogs by other allergy parents. You will learn from their experiences (or mistakes) and generally speaking have no qualms providing information as they don't have liability issues beyond the disclaimer on their blog or web site.- Last but not least, understand that change does not happen at an exponential rate and that in most cases, for things to really improve, something dramatic has to happen. Unless a number of people in high public office have children with severe food allergies, laws and policies will not be easily implemented because no one in office cares enough to push for any change. In this province, a child will most likely have to die of anaphylaxis before any real action is taken to prevent it, especially for children with multiple food allergies. You just have to make sure that it's not your child.With the above in mind, I am not going to tell you that everything will be okay, but I ask you not to give up. Things get better because you learn to adapt quicker. Allergy parents are a special breed. We are strong, resilient and creative. Keep your chin up and refer to this whenever you have doubts.
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...
Christmas is a busy time of year for everyone. In large family gatherings with kids running around, it can be hard to remember who is allergic to what, especially when allergies run in the family. This year, I thought the best way to remind everyone of Maya's allergies is through a little PR. Since I can't list her allergies on a sign and stick it on her forehead, I decided an allergy shirt might just do the trick. I went online and hunted for images of things/characters she likes, and added a variety of statements. I then take those images and print them on iron transfer paper, and apply them to the shirts (plain shirts from Walmart at $4 each). Then I embroider and applique other things that make the shirt look more dazzling. There are many allergy shirts out there, but I noticed that not only are they expensive, especially when you add shipping costs, but also there are none that I know of that are made for kids with multiple food allergies. Hence, I am making my own.
If any one is interested, just drop me a line, and I might be able to share some of the images I've created or I might be able to help you out with an image that specifies your child's allergies. I think an allergy t-shirt would make a great Christmas present too. The picture above is only an example. Many of the ones I made are generic and have no specific cartoon characters. Some of the statements are generic too. You can have fun creating your own. Please remember though, if you plan on using licensed or copyrighted images, to obtain proper consent for those. Copyright infringement is an offense in this country.
UPDATE: Regal Confections produces Rockets but the candy is packaged in Canada in different facilities, some of which are not allergen free!! The candies themselves are safe, but the packaging is not. Therefore, you need to read the label very carefully to determine where it was packaged. The only safe Rockets that I know of are the ones sold by Walmart in the jumbo size packages during Halloween season. Those are manufactured and distributed by Regal Confections in Quebec and Ontario. I have contacted them to inquire about the difference. Rockets sold in grocery stores are distributed by the facility in Wolfville and are not safe for people with allergies! I put a phone call to verify, and was told that Rockets are produced in the USA and the candy is safe but that once it enters Canada, it is packaged and distributed by a facility that is not allergen free. This facility processes peanuts, tree nuts, dairy, and eggs, among other allergens. The person I spoke to in the Wolfville facility stated "Our workers may eat a peanut butter sandwich and then start packaging the candy so there may be traces of peanuts on the candy wrapper, and we also process peanuts and other allergens in our facilities in Canada." Additionally, the distributors do not have a may contain warning about this on their packaging. They said they would notify upper management. What prompted this was a grocery visit earlier today, and I noticed Sobey's has Rockets repackaged but they put a sticker on it with a warning that it contains traces peanuts, nuts, etc. So for all intensive purposes, the Rockets in grocery stores and the ones in department stores are two different products. Read labels carefully to ensure your child's safety. Have a safe Halloween!
In my quest to find safe Halloween candy for Maya, I have stumbled across something interesting. Regal Confections actually makes candy specifically dedicated for children with allergies. Some of their candy includes the Rockets line (also known as Smarties in the USA, very different from the Nestle Smarties candy covered chocolates in Canada) which makes rockets, as well as those candy necklaces, and candy money. They have an allergy statement on Rocket's web site. It is really worth checking out. Rockets are dairy free, egg free, peanut & tree nut free, gluten free, sulphite free, and soy free, except for Bubble Gum Smarties which has traces of soy lecithin. But what attracted my attention was the fact that they have a web page dedicated to their allergy statement. Not too many manufacturers do that.
I just thought some parents may want to know that there is a safe candy out there for their little ones.
Have a safe and happy Halloween.