Child dies after trick or treating

This is just devastating.  When I read this article this morning, I burst into tears and cried so hard I couldn't stop shaking.  This is our nightmare, all of us living with food allergies, every single day.  The more I read about this boy, the more grief stricken I become, not only for the loss of this little boy and the absolute horror his family is going through, but grief stricken because it so easily could have been mine.  

This is yet another tragic reminder that no matter how vigilant we are, we can't control everything.  And that is terrifying.

Social Studies 101

Thank you, Chairman and members of the committee.  It is such an overwhelming honor to be able to sit here, as a private citizen, in front of you to present this bill.  Senate Bill 730 is an education bill that would simply educate restaurant staff about food allergies and how to accommodate a very loyal customer base.  In my experience with eating out, the servers and chefs want to know what to do and how to serve us correctly and safely, but without the training, they just don’t know how.  The education this bill would bring would help tremendously.  A little educaion really does go a long way. 

There is a website called allergyeats that I consult every time we have to eat out.  It is a national list of restaurants that are reviewed by families and individuals with food allergies.   My family has been traveling up north quite a bit over these last several months and because of this list, we only eat at restaurants with high reviews.  But, we have eaten at the same two restaurants every time we go up.  Individuals and families with food allergies are extraordinarily loyal.  We have to be.  For us, eating out is a matter of life and death.  There is a real need for us to eat in a restaurant where there is training so that we can feel safe.  And if we feel safe, we will frequent that restaurant over and over.   And there are a lot of us out there.

It sounds kind of strange to say “every time we HAVE to eat out.”   I would love to be able to say, “every time we WANT to eat out.”  This bill would make that possible.

This was the little mini speech I gave yesterday afternoon in front of the Senate Regulatory Reform Committee in the state capitol.   In March I had given a longer speech, MUCH longer actually, about how helpful this bill would be for everyone living with food allergies.  The bill requires training for restaurant staff, a poster in the kitchen, and a notice asking customers to notify their server if they have food allergies.  

The first step in this process of making the bill into a law is getting it out of committee, where so many other bills are lost.  Once it passes through the committee, it moves onto the Senate floor.  If it passes off the floor, then it goes to the House of Representatives.  I know that there is still a journey ahead of us, but this first hurdle, I think, may be the most difficult.

And it passed.  Unanimously.

I did not expect that.  At all.  I knew there were at least two members of the committee who objected to the bill.  

Unanimous.  Unbelievable.

I cried.  

And then I snorted.

Really loud.

But it passed!

there are liars out there....

This makes me sick.  Grow some balls and stand up for your child.  What is that child going to think when he finds out that his parents lied about his having allergies?  That lying is ok?  She doesn't think that a 6 year old knows the difference?  My child, AT THREE, knew how to ask about what was in the food he was going to eat.  ANY parent of a child with food allergies would give ANYTHING to have a choice of what their child eats.  This person right here is the reason why food allergies AREN'T taken seriously.  I know plenty of people who choose not to give their kids processed foods.  Sure it's difficult.  But they are good parents with a healthy moral compass, who *gasp* actually voice their opinions to achieve their goal.  What a concept.

The reason why the web page is not linked in here is because the enormity of the negative comments caused the blogger to pull the post.  At least that's why I assume it was pulled.  What was so troubling, though, was how many aggressively supportive comments there were.  The absolute douchebaggery of that mom is just mind boggling.  I understand that I probably could have voiced my opinion in a more..... dignified manner.  I can't help it.  This just pisses me off.

*ETA* *ETA again* I lie about my kid's "food allergy"

by Anonymous

Today at 8:11 AM

13 likes

My confession today: my son doesn't have any food allergies but I don't like him eating processed foods when he's at school or a friend's house, etc. so I tell people he has a food allergy to eggs and gluten. That eliminates a lot of the processed junk that people will allow their kids to eat and keeps him eating fresh foods. Plus, I don't have to worry that he is getting food from people's homes that might be unsanitary. You can't know what someone's house is like.

That's my confession. I don't feel bad at all and my son doesn't know the difference. He is 6.

ETA: At the school he attends you do not need a doctor's note to document allergies or to be dosed with OTC medication. If we were asking for him to have a larger than recommended dose if he had an allergic reaction, that is when the school needs a doctor's note. There are so many kids at the school with allergies and intolerances that they take them at face value unless they are considered so severe that they would require an epipen. He has never been picked on for having an allergy.

When I refer to people being unsanitary, I don't mean the homes that he may visit. I know the parents of the children he spends time with outside of school and have been in their homes. I am mostly referring to parents sending snacks in to school for birthdays, etc. Our school allows homemade treats and I have no idea how clean of a home they may have come from.

I do *NOT* expect other parents to provide food for him. I am happy to send in alternate snacks to school, to soccer practice, friends' houses, and anywhere else he might be getting food. I just don't want people to give him food. I have never expected anyone to accomodate him other than *NOT FEEDING* him.

I know that what I am doing is not the best moral decision, but I am doing what I think is best for my child. There are plenty of women on here that make decisions about child-rearing that I find horrifying, but those aren't my kids so I don't honestly care.

 ETA again: So, many people have been saying "he should get treats". He does get treats....treats I make and that are not processed. So he isn't totally deprived.

Also, for those that are saying "One little treat isn't going to hurt him". I am well aware of that. However, you are literally making my point for me. That is the exact attitude that forced me into lying about it in the first place.

an emerging epidemic...

If anyone has been wondering what this legislation is that I've been working for the last year, PLEASE watch this. The Discovery Channel and FARE (Food Allergy Research and Education) made a documentary called An Emerging Epidemic: Food Allergies in America.  It is on the Discovery Channel on Saturday, September 21 at 8am ET/PT. You can also watch it on the link I have provided.

When Ian was 2, he had a reaction in a restaurant and we stopped eating out. Three months later at a family wedding, however, we found that sometimes we couldn't avoid eating out. After a series of dealings with a caterer who had no idea how to handle allergies, I realized that something had to be done. I learned about the Massachusetts legislation, and I had heard that the Rhode Island legislation had been introduced, but it hadn't yet passed. I drafted a letter and my quest for legislation had begun.

One year later, I have a bill and a sponsor. We plan to introduce our bill in the next couple of weeks. To me, this bill is common sense and simply a means of education. Hopefully Michigan will feel that way too, and it will pass.

Again, please watch this. I guarantee that you have or will have someone important in your life with food allergies. A little education really does go a long way.

http://www.discoverychannelcme.com/patient-education/food-allergies

food allergy conference

Ok.  So what most of you may know, is that my son has life threatening food allergies.  What most of you probably don't know, is that I have been working on (hopefully!) passing legislation that will ensure restaurants be more allergy aware.  It's called the Food Allergy Awareness Act, and it was a groundbreaking law that passed in Massachusetts, but not in Illinois.  When I heard about this Act, I immediately went to work to try to get it passed in Michigan.  And to find out why it didn't pass in Illinois!

In short, it requires restaurants to hang posters in the kitchen that provide allergy information, it would require restaurant workers to watch a 30 minute training video, and put labels on menus asking the customer to notify the server if they have food allergies.  To me, this is a real no brainer.

It might not seem like a big deal to eat in a restaurant if you have food allergies.  Just don't order anything with cheese on it, right?  Not quite.

Several of you have eaten with me in a restaurant.  You know that it takes me 10 minutes to order a bowl of oatmeal.  And you will also note that I really haven't eaten in a restaurant in months. After experiencing your two year old go into full blown anaphylactic shock after eating a piece of bread that was toasted on a pan that had once had butter on it, might scare many of you into trusting your child's life to restaurant workers.  Most of whom, I might add, are accommodating.  But many of whom are high school kids who think "just a little butter won't hurt," or people who are apathetic and snarky, or people who just don't know.   It's not their fault if they don't know.  And that is exactly what we need legislative help to change.

There is a great website called Allergy Eats, and this is where you can find restaurants that are allergy friendly.  Or not!  It is a list of restaurant reviews from all over, compiled by customers with allergies.  The people who give the best recommendations are those who have the same concerns.  I love this site.  I have added some reviews of my own...

Anyway, Allergy Eats is sponsoring a Food Allergy Conference for Restaurants in Boston, Massachusetts, on Tuesday, October 16.  You can find the information here.  I am hoping for the day that we can have these in Michigan, with the Michigan Restaurant Association president as a keynote speaker...

Wish me luck on my venture, and I will keep you posted with my progress!  Because there WILL be progress.  My current state of idealism and optimism simply does not allow for anyone to say no.