A happy and proud food allergy mama…

My food allergic son John will turn nine Wednesday. I know we all cherish our children’s birthdays, but for me, I especially thank God every year on John’s birthday that he is alive and well, and pretty much like any other 4th grade boy who loves sports, playing guitar and hanging with his friends. I used to dread John’s birthday because I was reminded of all the things he COULDN’T have; pizza, cake, cupcakes, candy and ice cream. But for several years now I am reminded of everything he CAN have, and that his life is by no means living without. John lives as fully as any kid I know, and appreciates every little thing in life (for example, his sincere joy and gratitude from being able to eat a peanut free Vegan Ice Cream cone at Lollapalooza this year…he truly enjoyed that moment for all it was worth). I think sometimes as a parent of kids with food allergies and special needs, I get weighed down by advocating and keeping my kiddos safe and happy. But I’m increasingly letting go and trusting that all will be well. Always vigilant, of course, but trying to infuse way more fun and timeless carelessness into our daily lives and routine. This year, on John’s birthday, I will light a special candle for him and for all the kids out there who perhaps were given the short end of the stick, whether it is with food allergies or with learning disabilities or serious illnesses, EVERY child deserves to feel like they are like any other kid.

Finally, after years of debate and efforts to promote food allergy awareness at my son’s schools, the day has finally come where I feel like we have made TREMENDOUS progress. Today I attended our schools’ Room Parent Meeting, to which our principal got up and addressed the room parents about the seriousness of food allergies, and that new procedures will be in place. For example, our school will celebrate birthdays AND holiday parties in a NON food manner for Kindergarten, First and Second Grades. The third and fourth grades will be up to the discretion of the classroom teacher. Grade level parties will be conducted with NO FOOD (remember my 1st grade Spanish Mercado and Thanksgiving Party stories?). Finally, the district has developed a comprehensive list of Food Allergy Policies and Procedures, as well as specific Food In Classroom guidelines. The link is here and I strongly recommend you forward these documents to your schools and preschools so they can further develop their own safe food allergy best practices. There are also sample letters and tips for you to use. During my principal’s address today, she went out of her way to mention that if any parents in their children’s classrooms have concerns about No Food Parties, or are getting any push back about safe snacks, etc. (ie Dairy Free classrooms, etc) that they should contact her directly. She doesn’t want anyone to feel like they have to defend the policy, and that she will take the time address the seriousness of the food allergy policy. As a “food allergy mama” advocate, I have had more than my fair share of parent push back on food policies I’ve advocated for years (thanks to our rights outlined in John’s 504 Plan). Hearing this come out of my principal’s mouth meant the world to me, because it allows me to not be the “face” or take on the burden any more. I’m truly grateful and excited for these new policies, and hope you can use some of the documents in your own schools.

Have a GREAT beginning of the school year everyone!!!

Summer is almost over, school is about to start, are you ready?

Howdy! Wow, I feel as though I’ve been kind of a loser blogger this summer (seeing as I have only averaged one measly post a month!). But I honestly needed the break. Last spring was so crazy emotionally and physically that I had to step back and just hang out. It was a great summer of a whole lotta nothing. This month in particular has been a blast:

LOLLAPALOOZA: My FA son John attended this amazing 3 day music festival for the 3rd year in row…not bad for a soon to be 9-year-old boy! John is a true music lover, and enjoys everything from rap and techno to reggae and rock. He will sit patiently for hours and listen to a new bad he hasn’t heard before, or roam the enormous festival grounds and take in a view of the masses. I’ve taught him the two most important lessons while attending music festivals; watch where you are walking (in order to avoid stepping on something you don’t want to) and when using the portapottie, focus on happy thoughts and get in and out very quickly. John’s personal highlights included seeing Foo Fighters and Deadmau5 live in the pouring rain and getting a decadent Chocolate Chip Cookie Dough Ice Cream Cone at the Temptation Ice Cream Booth (Vegan Ice Cream made by the excellent Chicago SoyDairy. It was the coolest thing to witness; a food allergic kiddo ordering his own cone at a music fest:

 

 

 

 

Big kudos to the Lollapalooza staff because they allowed us to bring in our own safe food for John in a cooler as long as we had a doctor’s note. Security was pretty cool about it, except for one jerk who questioned my note, and said any person can fake a doctor’s note. I looked at him with my best evil “Don’t F**** with me” look, one I think only a mom can really give, and then kindly asked if wanted to “search” the contents of the cooler to make sure I wasn’t smuggling in other stuff I shouldn’t be smuggling in. I was half-joking, but he got all serious and dug into the contents. Once he saw graham crackers and a turkey sandwich I think he felt like a tool. Or at least I hoped he felt like a tool.

So now that summer is winding down, it’s time to shift gears from lazy to crazy. Except this time I’m going to go less crazy and not stress as much as I used to about getting my kids ready for the school year. I’m not buying any new school clothes until it’s REALLY fall, I’m not going to be a room parent for the first time in 9 years, and I’m going to think positively that all the hard work of developing IEP’s and 504 Plans last spring will pay off this fall. But just to be sure, I have contacted my FA son’s school principal to facilitate a meeting with our nurse, assistant principal and teacher. John’s 504 can be carried over annually until 2014 (when we reassess eligibility) but I always like to make sure everyone is on the same page from day one so there is no confusion down the road. Many of you have written and asked me about 504 Plans, and how to draft them. If your child has a life threatening food allergy, he may qualify if he “has a physical or mental impairment which substantially limits one or more major life activities, such as caring for one’s self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, working, eating, sleeping, standing, lifting, bending, reading, concentrating, thinking and communicating”. Schedule a meeting BEFORE school starts with your child’s principle to determine eligibility. In regard to how to word the language in the 504, it’s simple. Ask for as much protection you think your child needs because it is your child’s legal right, and ultimately your child’s school will want to keep him safe. After many years of tweaking John’s plan, here is what I asked to be written in the document, and what was agreed to by all parties:

Medical 504: John must have medications at school (Benadryl and Epipens) in case of accidental ingestion of allergens above (name allergens, history of reactions, how your child reacts (ie via ingestion, touch) and indicate whether your child has asthma.) John’s classroom will remain peanut free and dairy free. John has the option of eating at the peanut free table in the cafeteria during lunchtime. Care must be taken that John is not given any foods containing milk, peanuts, tree nuts, legumes and or peas. John’s parents must be notified anytime other than usual snack time, that food will be offered in any of his classes. Parents will then come in and examine the food labels to check for allergens. Students, in any classroom John is in, will bring their own snack and there will be no sharing of snacks. Parents of John’s classmates will be given a letter on food allergies at the beginning of the school year. Parents will be given alternative activities for birthday parties (no food will be served). These include reading a book, leading a game or sending non food goody bags. The nurse will provide information regarding John’s allergies and asthma to all teachers that work with John including specials teachers. An extra epi-pen will be kept in the cafeteria. John will wear a medic alert bracelet. The school staff will be trained in the use of the epi pen at the start of the school year. If John has an asthma attack, he will be escorted to the office by an adult and the nurse will administer Albuterol inhaler as per doctor. An Emergency Action Plan is in place. A copy of it is in the substitute file, in the nurse’s office, and attached. John’s reactions to his allergens: hives, itching, mouth hurts and vomiting, difficulty breathing. When staff members observes hives he will be given xx dose of Benadryl immediately. The parent will be called to pick up John. If John complains his mouth hurts, coughing, itchy throat and difficulty breathing, and it appears to be allergy related, the school staff will administer the EpiPen. The school nurse will be contacted and 911 will be called. Then the parent will be called. John’s medication, wet wipes and EAP will go on all field trips with him.

Feel free to use this 504 Plan for John as your own guide in developing your child’s specific plan.

Finally, I wanted to share a link for you to check out, and go vote for me as a “Momimee” at Babble. The winner with the most votes gets $5,000 to go toward their favorite charity (which would be FAAN and FAI for me). My BFF in Arizona nominated me (unbeknownst to me), and I’m thrilled and honored. Pass the word along in the food allergy community and vote HERE . Every dollar for food allergy awareness counts!!

Have a great last few weeks of August everyone and totally looking forward to working a little harder in the fall! xoxox