I am glad I took this time to focus on food allergies. There are a ton of feelings that get swept under the rug and put on the shelf for examination for another day because Aaron is not in crisis as often as Ryan.  Food Allergies are hard to live with but can become manageable.  My kid went from a severely underweight baby, to a tiny and skinny young child, to a tall, lanky, strong but some what thin boy.  He has a vocal and bubbly personality. He is rough and tumble and always on the move, but still asks to sit on my lap.  Now at seven he is already eating me out of house and home and I fear having to feed him as a teenager as I do his brother, not because of Aaron’s food allergies but because of the sheer amount of food these boys may eat. I have to listen to Ryan complain Moooooooooommmm not chicken for dinner again but he would do that if Aaron had food allergies or not.

I am so proud of the advocate my kid has become for himself. I was just so in awe of him as he stood up in front of his class this week and talked about what foods he was allergic to and how he keeps himself safe.  He spoke clearly and frankly about how he hates when people feel sorry for him because he never had ice cream.  He said there are other treats and to me ice cream tastes awful and could kill me, who would think that is a treat?  I hope he can keep his head up and continue his self advocacy because for food allergic kids the teen and the college years are the most dangerous.

I hope I was able to teach you all  more about food allergies, what it is like to live with these allergies, and that washing your hands around a food allergic person should never be questioned.  Remember always a little understanding and flexibility goes a long way in dealing with other people and their issues.

People in my life either are food allergy friendly or they are not.  There is very little gray area.  My sister who is in her 60′s is not food allergy friendly.  She knows it and she has mistakenly exposed my kid to allergens more times than she wants to admit. If Aaron spends any time with her she gets VERY nervous and makes me sent ALL food for him to consume because food allergies do not make sense to her in a meaningful way.  My eighty year old mother on the other hand is extremely food allergy friendly. When we go to her house to visit I bring very little food with me.  She loves finding treats she can give to Aaron and she was the person who discovered that Oreo’s were safe for him.  She loved to be able to give him that treat!!!!  I remember his face after the first Oreo and we laugh about it to this day. She has no problem cooking allergen free when we are there and visiting her takes on the air of vacation because I am not doing all the cooking for a change.

Finally there are the parents who believe that their child should be able to have any of Aaron’s allergens in his vicinity at any time.  That is CRAZYTOWN!! I never want to tell another parent what they can and cannot feed their kid but just don’t have your kid eat it near mine and please could your kid wash his hands after they are done eating the allergen.  I can tell people feel especially put out by this. I’m sorry my kid could DIE from what your kid is eating please eat it over there and have your kid wash his hands before our kids continue wrestling is not a huge request. People get crazy indignant about it and feel like I am infringing on their child’s freedom to live because I asked them to wash their hands. Step back.  There is a percent of people who believe food allergies don’t really exist. I remember a few years back Joel Stein published a piece in the LA Times about food allergies being a “yuppie invention” and a psychogenic illness.  Ironically, he is now the father of a peanut allergic child. I wrote this post then and it still rings true. Believe me I wish Aaron’s allergies were a psychogenic illness, but sadly they are not and this kind of thinking could kill my kid.

Food Allergy peeps, what are your pet peeves around food allergies. What behaviors from people in the world get your blood boiling when it comes to food allergies?

1.  Of course, the first link I will post is Food Allergy Research and Education (FARE).  They are an incredible resource for both the newbie to food allergies and the veterans alike.  I have been meaning for YEARS to become a member of this group.  Fifty lashes with a rice noodle for me.

2.  I met the author of this blog, Multiple Food Allergy Help at Blog Her 2012.  Jenny was one of the only other Mom I ever met with a kid who living with so many food allegies.  It was inspiring to meet her and one of the highlights of the conference for me.  She is one of the organizers of the first Food Allergy Bloggers Conference being held in early November in Las Vegas.  I am hoping to get there, but that remains to see if I can budget for it and if my husband can take off work to be with the kids.

3.  Sloan Miller’s blog, Please Don’t Pass The Nuts was one of the first food allergy blogs I ever read.  She is an adult with food allergies and reading her blog helped me to gain the confidence to navigate restaurants with my food allergic kid.  Eating out safely is always a challenge with a food allergic kid but she showed me that it is possible.  For that I will forever be grateful.

4. I have been following Please Keep Me Safe: Our Journey With Life Threatening Food Allergies for a few months.  Recently Randi’s kid passed a food challenge and gained back a food.  This news brought me so much hope that one day this might be my kid.  Her news made my week.

5.  The Allergic Kid is mostly a food and recipe blog.  Her kid has many of the same allergies Aaron has and her lunch box pictures would make any chef jealous.  I have gotten a ton of ideas from her blog.

6.  Food Allergies are serious business but they can be funny.  Food Allergy Fun is my favorite cartoon blog.  The cartoons often make he smile and shake my head in agreement.

Please visit these sites. They have all have changed my mind about how my family and I look at managing Aaron’s food allergies.

First I met Aaron in his class and he and I walked over to the nurse with a cupcake to thank her for the beautiful bulletin board.  She is new this year and I was the first parent she met in the school when I walked in armed with epi pens and Ryan’s epilepsy rescue meds. We have been friends ever since and she sends me home allergy magazines and she attended Ryan’s IEP to make sure the medical side of things were set up properly.

Then the teacher had the class sit on a rug.  Aaron got to help me by holding the slides on paper for the presentation as I talked.  It was great.  The kids were fun, curious, and full of good questions.  It was apparent they cared for their classmate Aaron and his well-being.  Their little faces and answers charmed me.  Then after our presentation and little Q and A, Aaron helped me hand out the book marks and the coloring pages. The kids colored happily as we handed out the cupcakes and the juices. Aaron was then allowed to walk around the school handing his favorite teachers cupcakes and bookmarks. We headed to Ryan’s class and gave his teacher bookmarks for his whole class and we were allowed to give Ryan a treat of a cupcake.

The day was then over and we headed home a little earlier than normal.  All of the prep and baking was worth it to see how excited and proud my kid was to tell his world about food allergies. He amazed me when he sat in front of his class and told them about all five of his food allergies and exactly what they were.  For him Food Allergy Awareness Week means empowerment and confidence.  It let him explain to those who share a space with him exactly what his issues are.  He was not afraid, nor was he embarrassed, it was all matter of fact for him but enlightening for those around him.  Worth every minute.

1.  Eight food’s account for 90% of food allergies.  These are milk, eggs, peanuts, tree nuts (e.g.,walnuts, almonds, cashews, pistachios, pecans), wheat, soy, fish, and shellfish.  These allergens have to be listed on food labels sold in the United States.  The other 10% of foods people are allergic to can be anything from spices, I know a kid with a mustard allergy, (shout out to my peeps in Maine), Aaron is allergic to beef and pork, and I know another with sesame sensitivity.  The food allergies to food outside the above which are called “The Big Eight” are much harder to manage. Mustard does not have to be listed on a label it can be just listed as “spice”.  I had a print out when Aaron was a kid of all the hidden ingredients in food that could be beef or pork.

2.  One out of thirteen kids have food allergies.  Food allergies are on the rise. A few years ago when I was doing this research the number was one in twenty-five kids had food allergies.

3.  If you are allergic to a particular food, you may experience some or all of the following symptoms:

•  Itching in your mouth or swelling

• GI symptoms, such as vomiting, diarrhea, or abdominal cramps and pain

• Hives or eczema

• Tightening of the throat and trouble breathing

• Drop in blood pressure

My kid usually does not experience swelling but he has had all of the above at one time or another when exposed to his allergens.  I find that as Aaron grows he almost never has eczema or hives.  If he has an accidental exposure he almost always has vomiting and the blood pressure drop which makes him look dazed.

4.  Boys appear to develop food allergies more than girls.  That I did not know.  Interesting.

Let’s start with the minimizers.  These people imagine allergies and think of a few hives or when I say one of my child’s allergies is to milk they say, ohhhhh he is lactose intolerant?  I find these people infuriating. I usually reply no, my son is ANAPLACTICALLY ALLERGIC TO MILK, EGG, PEANUT, BEEF, and PORK.  Meaning his reaction to milk could be deadly.  This usually leaves the person blinking as they stare at me glazed over. They might say oh but I bet the other allergies are less except for peanut.  I then say when they tested him in the hospital with egg, his allergen with the least reaction on the Ieg test, he received 1/10th of an egg.  His reaction was his blood pressure dropped and he vomited profusely. The doctor came within one vomit of using the epi pen on him and taking him to trauma No, he is super allergic to all his allergens.   They usually then scurry away frightened because you are really never supposed to tell the truth now, are you. These people are dangerous for my kid.  They are the people who would not think about cross contamination in a restaurant kitchen or make mistakes when I ask what are the ingredients of a  food product.

Then there are the people who react to your kids allergens with a horrified what does he eat?  I usually reply well he can’t have milk, egg, peanut, beef or pork but he can have all fruits and vegetables except for peanuts, he can have turkey, chicken, or fish, he enjoys soy products, and all grains including wheat. That is believe it or not most of the food in the world. Then they say oh you must do all your shopping at Whole Foods or other super expensive supermarket.  Believe it or not I do not.  I shop at the regular supermarket and I go to a produce store weekly because my kids eat a ton of produce. During swim season I could go through three to five pounds of bananas in a week.   I do occasionally go to Whole Foods or other fancy supermarket to buy treats.  You read it right, treats. My kids love Jello but Jello is made with ground up beef bones so Aaron is allergic to it.  I buy things like vegan jello, soy pudding, soy whipped cream, soy ice cream, and stuff like that.  It is usually around the holidays or a birthday I wind up going to the fancy expensive supermarket.  The rest of the time you will find me reading labels and buying simple ingredients to cook for my kid at the same store you shop in.

What other reactions have you received when telling someone about living with food allergies?

Always on Mother’s Day I think about the time I mistakenly gave Aaron the wrong sippy cup.  When the boys were little I had color coded sippys.  Ryan would get the blue sippys because he had blue eyes and Aaron would get the green cup because he has green eyes.  This would have us making less mistakes about who was getting milk and who would be getting soy milk.  We were making dinner for Mother’s Day and the kids were excited.  It was pretty mayhemy around the house because the kids wanted to eat on the deck so at the last minute we were moving the dishes outside. Somehow the green sippy cup wound up with cows milk.  Aaron was eating heartily which was not the norm for him at the time, nowadays I can’t keep the kid full.  Suddenly he took a sip of milk.  He knew it was not soy milk right away and spit it out without swallowing. He is very allergic to milk and just getting milk in his mouth had me with a very sick kid.  Aaron became very lethargic and started vomiting.  We gave him benadryl immediately.  He was ok after a few minutes although he would not eat until the next day.

We barely avoided the epi pen and the hospital.  All over a mix up.  I will always remember him screaming at me as he vomited, Mommy why are you trying to kill me??? These words haunt me in my nightmares to this day.  I must have apologized to the kid about 7 million times over the next few days and after that he ALWAYS checks his cup before drinking although we don’t have regular milk in the house anymore since Ryan has stopped drinking it.  This story always pops into my head on Mother’s Day and incidents like this remind me to always remain aware and alert when it comes to Aaron’s food.

Today kicks off Food Allergy Awareness Week.  Readers do you have any questions about food allergies, living with a food allergic person, anaplaxsis, or cross contamination? You are all going to have to suffer through seven posts about food allergies but they are a dangerous life threatening condition and people need to learn how dangerous they can be for some people.

I hope everyone who nurtures has a great day today.  Not just Mother’s need to be honored you know….

The quilt my mother in law made on my bed.

do have trouble sleeping it is because I have some serious drama going down in my life, or I am trying to sleep in the day and my body says, NO. I like flannel sheets and snugging in.  Yes, I love to sleep and dream.  Sleeping late is especially decadent.  I try to sleep in on Saturday mornings but once the house is active I am unfortunately, up even though I go to bed about 4am.  It’s hard because I pretend to be a person who can live working late into the night or early in the morning, depending on how you look at it,  but I have unfortunately become a complete day walker.

This was harder when the kids were younger. Ryan is a total early bird.  When he was 3 to 5 years old he got up between 5:00 and 5:30 am every. single. day.  I am still not sure how I worked three nights in the bar at that time.  Someone always had to get up with Ryan because he was so impulsive and still little.  As he has grown, Ryan sleeps later.  He occasionally still gets up at the crack of dawn but these days he tends to get up at a reasonable 7am.  Aaron is my sleeper but he is usually up a  little after Ryan, rarely getting up before Ryan.

This morning my Ryan, the early bird, got up at about 8AM.  He is bigger now and does not need us to make sure he is ok.  He got up, warmed up some leftover pizza, and played Minecraft happily till Aaron got up.  Aaron got up and came into bed with me at…hold onto your hats….10 am.  Yes, you read it right 10 am.

I can’t tell you how good I feel after a long late night at work.  I slept two to three more hours than I usually do on a Saturday morning.  I usually trudge through the chores on Saturday with cobwebs in my brain and a short temper.  Not today.  I felt normal and got a whole weekend of chores done in a day!  Oh I wish we could make this morning a habit. It’s amazing how something you took for granted before the kids arrived becomes a complete luxury even almost a decade after they arrived.

Last week I was facing a bar full of new people.  This week about half the regulars were back with their antics and stories. Still though nothing keeps you moving and working like a laugh or a story.  I love when the bar is full with people you don’t have to ask what it is they drink.  You can just deliver it. Loosing regulars to things like cross country moves or attrition is normal and usually right behind them are new regulars who are just moving here or discovering us. With an open mind I wait to meet the people who make my night a little shorter and put a pep in my step because Mama needs a night to fly by and to laugh.

The first thing that someone says to me is gasp, he needs to be with other kids. In their minds I am locking my kids in the basement or something all day alone with video games and candy.  Our summer is two things, fun, and very busy. First they have swimming. Every morning they have an hour and a half practice. After that they go to tennis lessons.  This starts as soon as school ends and ends on August 1st.  July is an intense month with daily practices and meets two days a week.  Sometimes the kids are so into swimming they attend the morning and evening practices.  Add to this summer school.  I home schooled summer school last year and it was great. It allowed Ryan to get ahead before the next grade and it did the same for Aaron.  Heck, it means the revival of their blogs which are just so fun. Then Ryan will have therapies probably behavioral therapy and OT.  Add to this memberships to the zoo, Franklin Institute, the Constitution Center, and a pool membership where they can play outside all day as well as swim.  They go to a sitter one morning a week with other kids and play outside with the neighbor kids with any spare moment they have. August is a little more laid back in where we go to the museums more and play at the pool.  We tend to do more school in August because July is that crazy busy.   I really enjoy being with my kids over the summer. We even build in movie time on Thursdays so I can get a nap before work.

What am I missing?  What are they supposed to get at camp that they can’t get with me?

The parents of the students enrolled in the school are angry.  The last three years running we have been handed doomsday budget proposal after doomsday budget proposal. When you think they can’t cut anymore, they cut again.  Soon enough the school will have one principal for 500 students and no one else. I am not sure what they want to cut from the school that has not been cut already. The school is bursting at the seams and it is more and more with each passing year becoming a place I am afraid for my kids to be, and I am not alone.  I digress.

The parents are angry because every year we are handed an unrealistic budget.  The parents make calls, go to meetings, go to Harrisburg, and write letters and emails then they are not really listened, to handed a pittance, and shussed to go away. The School Reform Commission (SRC) is full of corporate people and politicians but not one parent, and only one school based representative.  Philadelphia does not have a school board and hasn’t had one since the the late 90′s – early 2000′s.  Of course you can go to the SRC meetings and speak but from what I see no one listens to the parents of the kids in the district, and then they make arbitrary decisions that almost never have the well being or education of our kids at heart.  At the end of the meeting we were told other schools have courted sponsorship from outside institutions.  There is no transparency about why the cuts are made and what money is going where.

It is just so dismal.  I don’t want to have to pick between a great community, convenience of city living, and a support system over a school.  Of course Ryan is not going to school next year but for Aaron it has been a great experience so far. I remember picking him up sick from school this winter, and he cried as we pulled away because he did not want to leave.  I can’t send him to a school that is dangerous for him not only because he is food allergic and can die if exposed to his myriad of allergens, but because there is a lack of supervision.  Does a kid have to die at school for people to take notice? I am not sure what it is going to take but something has to be done if there is going to be schools in the city beyond the $25,000 a year private option or religious school.

Instead of sweating it tonight I sat with Aaron as he flew through his homework.  He sat his lanky self on my lap to read his book out loud.  I tried to savor the little time I have left with him on my lap as he rubbed his soft cheek on mine.  After we were done we played a card game before he headed out to play with the kids. It was so sweet and might I say homework was relaxing.  I keep waiting for the “angst of homework hell” feeling I get nightly but it never comes when I do homework with Aaron.  The difference is night and day for all of us.

31 schooldays left, 31 schooldays left.

One day I was minding my own business and twitter sent me an email saying that Elisa had added me.  I was kinda shocked and I asked my friend, Cecily who is very well known in online publishing about it.  She said to me offhandedly, oh yeah, I recommended you for a job.  I laughed and said ok, well thanks for the warning.  The next day I got a tweet about the job.  While I was at CHOP with Ryan I wrote a long letter to Elisa about my experience from the band, to the Kinesology degree, IT, and special need parenting.  Within the week I was working for Elisa. The first day I was overwhelmed with starry eyed fan girl stuff, then I was inundated with emails.  I thought to myself that I won’t ever be able to do this in the hours we agreed upon.

I put on my big girl panties, so to speak, and opened up an email address for her and I to use to communicate because work emails, along with all the other emails I get for my personal life had me running in circles. I muscled through the first few weeks and suddenly Elisa’s duties became just another thing I do daily, like make my kids lunches or make their medical calls.  I liken her to having another kid or another spouse except she is someone who I have never had a conversation, just emails.  I did see her speak at BlogHer and she did speak with my roommate at BlogHer about her panel as I stood there, but really we have only known each other via email. I think it to be oh so very interesting to have a job that involves just email.  It may grow to incorporate other media but I have a job that is online.  In 2006 I dreamed of being able to work this way so that I could be close to home for the kids and their needs. It only took seven years but I made it happen, kinda.  Although I am working online I am not giving up the bar anytime soon.  My next dream is to work at the bar one night a week. Let’s hope that dream does not take almost another decade to fulfill.

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I remember when the boys were babies.  My sister, who is now the parent of 20-somethings, would always be rushing my kids verbally through the developmental stage they were at and talk about the next stage.  Often I wanted to put my fingers in my ears and scream NOOOOOOOOOOO!!! I wanted to enjoy them right now exactly the way they are but as is her personality, she was always rushing ahead.

Today my sister called to tell me about a festival she went to with her husband and the dog.  She talked of meeting the parents of her daughters friend and how they laughed about how they used to go to these events with their kids and now they go with the dog.  She again was rushing me out of parenting into empty nest land.

Around here we have entered the age of the “friends”.  On our block 80% of the kids are boys, the percentage is way skewed.  My kids are at the age where they wander outside on their own. The backyard is shared by sixteen houses and it is a hilly place to play  We have a large driveway that is shared by eight houses so we have the perfect off street place to scooter, ride bikes, rip stik, and chalk. Kids from all around the neighborhood are here to play.  Actually after a sunny mild weekend like this one there are so many chalk drawings it seems that the driveway is turning yellow, pink, or blue instead of black.  We are at the age where kids ring the bell to play and friends come in to play computer games after a while, then everyone returns out to play ball again.  I am burning through ice pops, fruit snacks, and cans of seltzer at an alarming rate.  The adult neighbors stop by to get their kids or ask a tech question and wind up on the deck for a while or a kid comes over asking Ryan to help him find his lost puppy.  It is as friendly and lovely as you get. I like the hustle and bustle of the kids coming and going and hearing the funny things they all talk about.

There is no way my sister is rushing me out of this stage. A stage where I can trust when Aaron is at other peoples houses  is not going to eat something that could kill him.  A stage where less and less the neighbors kids come to report that Ryan is behaving inappropriately.   I am going to enjoy exactly where I am and go to the store to stock up on ice pops.

As I woke up to get dressed I told Ryan it was almost time for his weekly play date with our neighbor A.  A is on the Autism Spectrum and has very limited verbal language, although he has a machine he can use to communicate. Ryan has always adored A, since they were toddlers and A adores Ryan. I can see A’s excitement as Ryan walks up. A’s Mom likes to joke that Ryan and A live on the same planet, just different sides of the same planet.   A has a ton of cool sensory toys which Ryan loves.

When I told Ryan it was time to go see A he bounded up off the couch, grabbed a can of seltzer, and headed out the door with a smile on his face. He completely understands the communication of a non verbal kid but a gang of neurotypical girls can leave him frustrated.  Good for him to know his limits and to choose those whose company he prefers without caring about what the other kids think.

That kid makes me proud in ways I never thought possible.

I am holding fast and tight and repeating my mantra today of 33 days, 33 days, 33 days……….

This report card conference was a piece of cake. There were a few reasons why. This year I have used the school web portal to check on Ryan and Aaron’s grades.  I knew walking in what the report card was going to say. There would be no blindsides with F’s or D”s.  Ryan did well for him.  He didn’t receive any grades lower than a C.  Mind you he was failing social studies and science most of the way through but killer projects and high homework grades helped him through.  He is magically holding his own.

Also I cared less. All the teachers were worried for his fourth grade experience at school but I am not because he is not going to be there.  Suddenly the stakes are less and I can see a light at the end of the school tunnel.

Aaron’s report card conferences, on the other hand, are a totally different experience.  I heard from all three of his teachers, he is a exceptional student, he is great to have in my class, he is a model student, what a great kid, what a helpful kid, he is a social kid, and the only time he is in trouble is when he is being a little too social. His homeroom teacher thought he probably is going to be a politician, which I found hilarious.  They exclaim, here are all his tests that are all over 90%. Then they hand me his report card which is all A’s. Regularly, I question is this my kid.  MY KID.  All A’s??  Lovely to have in class??  It is hard to fathom and at times it makes me a little uncomfortable because it is such a different experience.

This was Ryan’s last report card conference in this school.  He will receive one last report card but that comes without the conference. I am so ready for school to be over and so excited about helping him start a new academic chapter.

Onwards.

Whenever I talk about these trials my husband gets very excited.  He is a huge peanut lover.  He dreams of a vat of peanut butter in my house that he and Ryan together are smearing on everything they eat at every meal.  He then usually dreams about buying Aaron an ice cream cone someday. This morning he was getting Ryan all excited with thoughts of peanuts in the house.  The dreaming went on and on.

My poor guys peanut and milk dream bubble was popped quickly because reality hit.  In Philadelphia they are only testing kids who are over 12 years old, and Aaron is just 7 years old.  She said she would add Aaron’s name to the database to be on another trial because they had a sub lingual desensitization trial starting soon for kids 6 years old and up.

You’d think they by now they’d be used to not having this stuff in our house.  I guess my husband is going to have to put his ice cream and peanut butter dreams on hold for a while but hopefully not forever.

Ryan

ok kid what is your name.  – Mom duhhhhh

What do you think about not returning to your school next year?  I can’t wait to be out of school.  I hate it there, well except Ms L’s class.

What is your favorite thing to do right now? Play MINDCRAFT.  On the computer and in real life in the woods.

If you could go anywhere in the world where would you go?   France.  I then asked why France, Ryan?  You know Mom it is a love country.  Maybe I will meet a girlfriend (insert me fainting on the floor)

What do you want to tell my readers?  My Mom’s blog readers are epic people.  They are always helping my Mom and stuff so she can help me.

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ok kid what is your name – Aaron.  In Minecraft I am KnowAaron you get it like No Aaron except it is KnowAaron because I am good at going to school.

What do you like about school?  I get all A’s and it is easy.

What is your favorite thing to do right now? Pokemon, I like to be outside as much as I can, and I like MindCraft.

If you could go anywhere in the world where would you go?  To the Houseboat we are renting over the summer.  I want to go NOW though.

What do you want to tell my readers?  I don’t hate my Mom but I fight with her all the time.  Well, I fight with her almost half the week.  Remember people I am a wildman!!!!!!!

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Well people there you have it.  Straight from the boys own mouths.