Talking Allergies

BC Mom:

You have to word it differenly. Never say "blah-blah free", the politically correct term is "allergy aware". I know it is all words, but if you say peanut fee, they immediately think that you are expecting them to provide a school that is completely free of all peanuts, even trace amounts, and there is no way that they can ever do that, so they start thinking about that you might sue them, or that you might phone the principal every time you see an O Henry bar wrapper in the school playground.

If you get used to saying "allergy aware", you will save yourself a lot of bother. You will get all the same things that you need for your son, even more, by going that route.

I agree with Saskmom, too. It is easier in the long run to go to a school that is already dealing with allergies. the best way to find out would be go through the phone book and phone all the schools that are close to you. Speak to the school secretary first, because in BC she is likely to be the one who does the hands-on first aid stuff in the school. She will also know if there are other kids in the school with allergies, and what is being done to protect them. If you get a good sense from her, ask to have the Principal phone you back so you can talk about registering your son.

Whatever you do, try not to look like you are over anxious. Anaphylaxis is managable at the school level, but if you scare them about how much they will have to change to accomodate your kid, you will scare them, and they will think they aren't up to the job.

These are mistakes I have made and learned the hard way about.

There are lots of schools in BC that have asked the whole school community to not bring peanuts, milk, whatever. They cannot guarantee that they are free of that particular allergen, so they are not "_________-free", but they are allergen aware.

My experience in Ontario is very similar to Pamela Lee's experience in BC. I have a child in grade 1 public, and an almost 4 year old in Montessori. No school will state that they are free of a particular allergen, but many will state they are allergy aware. Our almost 4 year old son is allergic to peanuts, tree nuts, sesame seeds, sunflower seed, mustard, egg, fish, green peas and pineapple. We will never find a school that will agree to be "free" of all his allergens. The school can only do their best to educate and request that all parents not send in a particular food, but the school will not guarantee this.

I have been a strong advocate for my son in his school. I began the education within his school about 18 months before he began to attend the school (fortunately, my older non-allergic daughter was at the school at the time). More recently, I have had several meetings with the principal and staff, provided some training and posters from Anaphylaxis Canada (How to use the Epipen, and Signs of Anaphylaxis), I've presented to each of the classes in my son's school - there are lessons plans that can be found on Safe4kids website, I read one of the Alexander the Elephant books, and showed the Alexander the Elephant Can't Eat Peanuts video.

I can't say it's all een easy - some individuals are more receptive than others. You have to be very diplomatic, reasonable, and well-informed. It's definitely an uphill battle at times, but so very necessary.

Best of luck!

I have good news!! I just recieved an e-mail from the Ministry of education saying they will meet with us!! It is not Shirley Bond, the Minister but one of her staff. I am not very good at compluter, but I am going to try to get my son to paste a chunk of the e-mail on here. Here goes:

"I am writing in response to your e-mail correspondence dated January 3, 2006, addressed to the Honourable Shirley Bond, Minister of Education, and Peter Owen, Lead Director, Governance Department. I am replying on their behalf. I would be pleased to meet with you to provide an overview of the Ministry direction and role, with regards to this important issue.

As Mr. Owen mentioned in his previous correspondence, the Ministry of Education is distributing the Council of Minister’s of Education document to all school boards and making it easily available to all schools through our Ministry website. As well, the Ministry will be raising awareness amongst senior school district staff of the importance of having local policy to address student safety. Government is not planning to introduce legislation at this time.

I appreciate your commitment to students and preschool-aged children within your school district and community.

Thank you, once again, for sharing your concerns with government.



Yours sincerely,

(original sent by email)

Susan Kennedy
Director – Diversity Equity & Early Learning
Accountability Department


Okay, so there it is. How come some people can make it in nice blue boxes?

Anyone have any stories they would like passed on that have happened in BC? Would anyone like to come - the meeting would be in Victoria - we shouldn't have too many poeple, but it would be good to show that this is an issue that affects many.

Please write to the Ministry and let them know how you feel - Ana is right - if you write to them they have to reply, so each letter has an impact.

I will find the e-mail address and post it here.

I am also meeting with my MLA Shane Simpson this Thursday, so if you want to e-mail him too that would be good.

(Sometimes I go by Pam Lee and sometimes I go by Pam Shroeder, as we just got married last year although we have been together for 15 and have two kids - they finally got old enough to suggest that we do it - I am just between identities!!! )

I received a written letter from the Premier:

"Thank you for your letter requesting that our government introduce legislation to protect students with severe food allergies.

In BC, The MInistries of Health and Education recognize the seriousness of food allergies. The Min. of Ed. is responsible for setting education standards, allocating funding, monitoring school districts for student achievement outcomes, and reporting results. School boards are directly responsible for policy, planning, and delivering programs and services for all students.

In the past, the Min. of Ed. has provided school boards with materials to develop local policies and procedures related to anaphylaxis and urged school boards to take action. Although it is nnot the government's intent to bring in new legislation related to this matter, the MIn. of Ed. recently received permission to print and forward a new, updated booklet producted by the Council for Ministers of Education, Canada - Anaphylaxis: A Handbook for School Boards - raising the importance of having policies in place to address the health risks of anaphylaxis. These will be distributed within the next few months.

Again, thank you for sharing your concerns with me. I hope you find this information helpful.

Sincerely,

Gordon Campbell, Premier"
(original was mailed to me)

So, it is a start, right?

Should I reply to this letter? How should I reply to this letter? Does this letter need a reply?

Hi BC Mom:

I would suggest that you reply to the Premier. In fact, I would provide it as a opportunity of educating him more fully on this issue. The "Canada - Anaphylaxis: A Handbook for School Boards" which he mentions is just a guideline - http://www.cdnsba.org/pdf/anaphylaxis_eng.pdf.

Firstly, it does not guarantee that school boards will follow these "suggestions". Secondly, how has the Premier or the Ministry of Education ensured that this "policy" is/will transcending uniformily across schools in B.C. School boards need a standardized and effective implementation plan. A policy does NOT equal law! A law similar to Ontario "Sabrina's Law" imposes new duties on all publicly funded school boards thus SAVING CHILDREN'S LIVES, children who have severe life threatening allergies. "Sabrina's Law" should go forward as being proactive instead of being a reaction to a tragedy waiting to happen.

Also, in his letter he writes "food allergies" does he understand these are severe life-threatening allergies? When the Premier describes the roles of Ministries of Health and Education - I am confused who is ensuring that shools are keeping your kids safe?

These are just some of my thoughts and questions.

Ana Wigger

Great points, Ana.

They might distribute the booklet, but without legislation, no one has to read it!

Hi Pamela Lee:

A great concern is who is ensuring that the school boards will be following any guidelines, let a lone reading a "recommended" guideline. There is no duty to follow through by school boards!

Food for thought (so to speak).

Ana Wigger

Thanks Ana and Pam for your comments. I have sent off my reply to the Premier and currently working on my reply to our school board. My reply to the Premier was "more of an opportunity to educate him more fully" on the seriousness of the issue. Thanks Ana for most of your wording.

The Victoria School Board also replied to my letter by adamantly maintaining "that our school district seeks to establish a safe environment in each of our schools for each and every student". With their reply, they sent me their respective Policy and the attendant planning forms. They stated: "I trust this demonstrates to you the comprehensiveness action plan that we have in the absence of legislation to declare schools "peanut free"."

First of all, my reply would begin with explaining that implementing Sabrina's Law in BC, would not be declaring that all schools be "peanut free". Implementing Sabrina's Law in BC would mean enforced consistent polices and guidelines implemented in all schools in BC to protect and provide a safe environment to anaphylaxis students. And, to have everyone aware of the situation by being given knowledge to that effect. And, to make sure all school staff are trained to administer the epi pen. Having the law means they have to do it, that someone will follow through and make sure those are all done.

Also, I would let them know that the handbook is fine and their objective is clearly to provide a safe environment to anaphylaxis students, promote an understanding of their needs to the wider school community, and to provide guidelines that allow school staff to respond to individual circumstances and provide emergency treatment to the anaphylactic child. But, without there being a law, without there being legislation that requires the school boards to enforce these policies and guidelines on the schools to follow these policies and guidelines, people may not read the handbook. This handbook may not be read until a concerned parent who will have a child who is anaphylactic to certain allergens enter the school and demand what the school is going to do to keep that child safe. Then there is the scramble to get all the school staff trained to be proficient to administer the epi pen. Then the scramble to have the school nurse or someone who is diverse in the knowledge of anaphylaxis to come in and do an in service on the students of that classroom. If there was a law then all these steps would be done automatically each school year, automatically a couple times during the school year on the retraining of administering the epi pen. Thus, the school staff, peers, friends, and students would be made aware automatically instead of springing it on them because there is someone in their class who is affected by anaphylaxis. Thus, many would take it in stride because they understand, they have the knowledge, they are aware of the possibility of a dangerous reaction. Thus, there wouldn't be the fear of being labelled "different" or "weird". And, so on and so on...Am I on the right track?

Of course I will have to word it so that I am not going around and around the issue but to be more to the point and it helps that people provide me with feedback, suggestions and comments. So, please give me some feedback on this issue.

I think that your arguements are all really good.

what all the politicians seem to be saying is "convince us that we need to go to the bother of legislation". Can you think of things we can use to convince them?

Letter writing campaign - can we set something up through the forum that would give all Alberta/BC politicians e-mails to make it easy to send mail to them all - is it a good idea to target them all or is it better to just concentrate on Ministries of Education?

How can we get statistics from the schools - we need to be able to show that the schools are not as safe as they could be for these kids, particularly the high schools.

We need to show them that it would actually be easier to have one consistant way of dealing with kids with LTA, rather then having each school reinvent the wheel.

Other ideas?

Those are all good ideas Pam!

When I tell my friends and families to write to the politicians, there is always that nagging feeling at the back of my head that it's not so simple for them to "just write a letter". Something should be set up in the forum to make it simple for everyone to write to them. Personally, I think it is a great idea to write to all instead of just the Minister of Education. It gets the word out there to a wider range of people and lets the other politicians give feedback to the Minister of Education. Otherwise it is just the Minister of Education hearing us and they want to be convinced by people other than concerned parents.

And, I definitely like your idea that "we need to show them that it would actually be easier to have one consistant way of dealing with kids with LTA, rather then having each school reinvent the wheel."

"How can we get statistics from the schools - we need to be able to show that the schools are not as safe as they could be for these kids, particularly the high schools." - Would we get this through Anaphylaxis Canada?

Sorry, still working on my reply to the School Board.

_________________
Son-anaphylaxis to peanuts, allergic to soy, peas, beans, tree nuts, cats, trees, grass & mold. Asthmatic due to colds & allergies.

Daughter-anaphylactic to kiwi fruit, allergic to soy, dairy, trees, grass, cats & dust

HI all! there was an article about getting legislation passed in BC in the White Rock Peace Arch News this weekend (the Feb 7 edition). I do not know there website, but I know you can access it on the web. Thank you to Cindy Paskey for passing it on. I will try to get a hold of the mom, Sandy Parr-Whitely, this week. Her MLA, Gordon Hogg, was cautious but positive.

The meeting I was to have with the Ministry was cancelled as the person has pneumonia, but it will happen in March - basically we are meeting so they can tell us what they plan to do to increase safety, but they are "not interested in pursuing legislation at this time". Our job is to convince them that this is a step that would make sense from many angles, and would be greeted positively by schools and the public alike, as it would increase the safely of the students. I am collecting information - if you have a story to tell, tell it hear.

Pam, I found the link: http://www.peacearchnews.com/portals-co ... 6135&more=

It concerns me that the MLA says they don't want rules that "blanket the whole system". That and statements such as BC Mom rec'd from the Victoria board make me think that perhaps the politicians and school boards don't realize what a simple, straightforward piece of legislation Sabrina's Law is.

It does not appear to be onerous to enforce. It doesn't "require" bans, as such rather it requires principals to take precautions appropritate to the populations of their schools. As for "blanketing the system," isn't that what we do for children with physical disabilities? Sabrina's law is a lot easier and less costly than wheelchair ramps - which no one today would argue with. I rather like the blanket image - consistency, security.

Perhaps when you and BC Mom are following up with boards and politicians, you should include a copy of the legislation. I also gave BC Mom a condensed summary of the law back when we were writing up a media pitch.

/Gwen

Once the new updated consensus statement by Canadian allegist association, Anaphylaxis in Schools and Other Settings, is widely available it should be used by anyone trying to lobby for change. The document contains recommendations for emergency protocols, plans and allergen avoidance in schools. It is an excellent document with the most up to date information about anaphylaxis from the medical community. I have a copy in my hand from my Ontario school. I wish I could give a listing on the web where it is located - but I can't find it yet. It is written for nonmedical people specifically for use in the school system.

The websites that are based on Anaphylaxis in Schools & Other Settings will be available soon (in English and French), and I promise I will be spreading the news far and wide as soon as that happens.

Anaphylaxis in Schools & Other Settings will also be available for purchase soon. Copies have been sent to all Ontario public schools, so they know about it now.

You patience is really appreciated. A very small group of people is working very hard to pull all this together. But it will be great once it's all out there for people to see!

Karen (working late on a regular basis...)

_________________
Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma

I live in Chilliwack, B.C. and my sons school is great. The principal is very passionate about keeping the school as peanut/nut free as possible. There is an emergency plan in place for all of the students with this allergy (8 in total I believe). My sons picture along with a profile of his exact symptoms and what to do in the event of an allergic reaction are posted in all of the classrooms that he goes into and all of the teachers are trained to use the epi-pen.

My son is in Kindergarden now and I feel very comfortable sending him each day. Although when it is a birthday party day, I still send my own cupcake for him as you can inform parents until your blue in the face and post nut free classroom posters all over the place but some parents just don't get it. When I parent help in the classroom I notice granola bars that I know have "may contain traces of peanuts/nuts".

The reason we moved into this particular neighbourhood was for the school, because I know that not all of the other elementary schools in Chilliwack are like this. In fact a parent of an allergic kid was talking about their school and the teachers are like, "well can't he give himself the epi pen because we don't know how, or we don't want to be responsible".

Its nice to know that the principal and the teachers care about what happens to my son. But I worry about when he grows up and enters middle school and high school and there is no law in place for these types of allergies. If all of the schools here could use my sons school as an example it would be a safer place for these kids.