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.