Saturday, August 30, 2014

Accomodations vs Inclusion

I think that it can sometimes be hard to determine whether to ask for accommodation for our allergic kids, or inclusion.  Surprisingly, it is often hard for teachers and administrators to acknowledge that there is a distinct difference.

Accommodation is adjusting the environment to make it safe for the child to be in it without making the child fully part of the activity, lesson, or party.  (It is providing a box of "safe" treats so that the allergic child can have a bag of skittles when the other children are enjoying cupcakes.)

Inclusion is making the environment safe enough for the child to participate at the same level the other children are- when  everyone has the same opportunity to experience the party or lesson.  Everyone participates in the same lesson , celebration, or treat.  No one is segregated to a safe distance, or given a safe treat that is different from what the other students are eating.

Accommodation is generally easier to obtain.

Children with food allergies are used to being on the perimeter of the party, never quite part of it.  The failure of our system to recognize that this is not equal treatment is colossal.

Schools are becoming increasingly open to providing a safe physical environment for allergic children.  It is more common to have a designated area for them to eat, have safe treats stashed in the classroom, and have safety protocols established to minimize allergen exposure at school.  Schools are getting much better at accommodation.  Inclusion remains elusive for most.

I believe it has an emotional impact on children to be in an environment that they must constantly scan for danger, to be forced to participate on the fringe as an outlier rather than be included at the heart of it.  The unspoken message is that their difference is tolerated, but not worth adjusting policy to include.  Which, in turn, can communicate that the child is not important enough to include.

The court system struck down "separate but equal" years ago.  We are again in a situation that separates children without adequate attempt to equalize the playing field.

When working with your school, informally or through a more formal IHP or 504, remember to spell out not only the physical safety needs of your child, but the social/emotional needs as well.  It is allowable to expect your child's whole person to be educated, accommodated, and included.  Work as a team to figure out how to maximize inclusion, set up accommodation when needed, and eliminate exclusion all together.

Please share some of the ideas you have for achieving greater inclusion!

Wednesday, August 27, 2014

Enlightening Experiment

Two years ago my children started in a new school system.  As we got settled in, I was amazed at how often they were being offered treats at school.

Initially I thought my perception was off, as the last school they were in did not use food based rewards with such frequency, and most were safe for my allergic kiddo.

Toward spring, I finally decided to track the amount of food they were offered at school, and whether it was a treat my allergic kiddo could have.  Just to help me get perspective on what was really happening and see if my mama radar was over-reacting.  (I blogged the results here.)

I encourage each of you to try this!  Mark on your calendar EVERY time an adult at the school offers or serves food to your child.  Regular teacher, substitute teacher, art teacher, principal, room mom, all of them!  Then mark if it was a safe treat that your kiddo could have, and if there was any prior notice given to you before the treat was given.  Last, mark the reason for the treat.  (Was it an incentive for behavior or performance? A reward?  A special occasion? Part of a lesson?)

At the end of the semester tally the results.  It will give you a very clear picture of how often and in what ways food is used in your child's school environment.

It was eye opening for me.  I realized that my perception was not off, food was present most days, most of it excluding my child.  It was even more eye opening for our school counselor and our health and wellness committee when I was able to share my results with them.  Having the data behind you to help illustrate your feelings about food in the school is amazing.  It's easy to call me an oversensitive mom, but it's hard to argue with a graph that shows the reality of food at school.

Try it.  See if your perception matches what is really happening.  Then share the results with your school to see if they are aware of how often and in what ways food is being utilized in the building.  It's a great way to have a conversation about the general health and wellness of the students, and especially the risks to children with food allergies.

Please let me know if you do this, and what results you saw!

Monday, August 25, 2014

Menu Plan Monday

With back to school in full swing, it is more important that ever for me to have my act together!  Having a meal plan in place helps.  Fewer last minute trips to the store, less time trying to figure out what to make, and pre-planning quick meals for the busy nights that have after school activities.

Monday (turkey)
Breakfast: lemon poppyseed muffins
Lunch: sunbutter and jelly sandwiches
Dinner: turkey pot pie, spinach salad with balsamic berries

Tuesday (beef)
Breakfast: turkey sausage on biscuit, green smoothie
Lunch: turkey roll ups
Dinner: beef stir fry over cauliflower rice

Wednesday (fish)
Breakfast: bean and veggie saute
Lunch: beef dogs
Dinner: salmon

Thursday (pork)
Breakfast: zucchini muffins
Lunch: salmon salad
Dinner: pork basil burgers, spiced peaches

Friday (vegan)
Breakfast: butternut bacon saute
Lunch: pork basil burgers
Dinner: Vegetable chili, corn muffins

Saturday (turkey)
Breakfast: waffles with berry reduction
Lunch: chili
Dinner: herb roasted turkey, sweet potato wedges, roasted broccoli

Sunday (beef)
Breakfast: sausage balls, herb roasted potatoes
Lunch: leftover turkey
Dinner: pot roast, peas, quinoa

I'll fill in the gaps with whatever produce is on sale this week, but this plan is enough to make shopping a breeze and simplify my week.  Hope you have a great week too!

Friday, August 22, 2014

The irony of increased independence

My food allergic daughter moved to middle school this year.  I met with the nurse and principal at the end of the school year last year, to review what to expect for all of us.  It's important to know what changes she needs to prepare for, and to let them know what types of safety needs she has.

The overwhelming message was: breathe mama.  Your little girl is growing up and you need to give her room to be more independent.  She can do this, and you need to back up enough to let her.

I'm working on that.  My little girl is getting much more outspoken.  She is blossoming in confidence.  She is learning how to advocate for herself with tact and assertiveness.  I know that most of the time she has a better handle on the allergy situation than any of the adults in the building.

But I also know that she is an adult in training, and still prone to judgement errors.  And I need to know the adults in the building have her back.  They need to understand the situation, and be prepared to step in and offer help with awkward situations, guidance with tricky decisions, and emergency help if there is a reaction.

This is the first full week of school.  So far, I have gotten three emails from different teachers with directions on how to check my student's planner for their homework assignment, what I should expect to be written, and what to do if the planner is blank.  Directions on how to log into the school site(s) to check on test scores, homework completion, behavior reports, and general class performance.  The general message being sent out is on how to micromanage my child's productivity, ability to complete work on time, and test taking preparedness.

So.  My take away: It's expected that you stay on top of your child's work habits.  Manage the snot of that.  But those pesky life and death dilemmas that come with food allergies?  Relax mama, step back.  Your kiddo can handle that.

Anyone else see the absurdity in this?  Or is my vision entirely too clouded by my allergy-colored glasses?

Tuesday, August 19, 2014

Back to school with allergies

Back to school time is such a mixed bag for parents.  Half of our brain wants to hold on to lazy summer days when our schedule can have a bit more flex in it, enjoy those summer moments with the kids just a liiittle longer.  The other half of our brain is ready for a break from the bickering that has started, the long days of summer that are starting to wear on the children rather than relax them.

Allergy parents start getting ready for the next school year earlier than most.  Many of us start in the spring, before the current school year is even over!  That's the time to contact your school and start the conversation about how to make school a safe place for your specific allergy needs.

In addition to purchasing the standard school supplies like lunch boxes and crayons, and prepping the all important first day outfit, allergy moms also:

1) Stock the medicines needed for our kids at school.  Liquid Benadryl, epinephrine auto-injectors, inhalers, topical steroids, etc.  Easily an extra $500 of essential supplies.

2) Chase down medical forms.  Print them from the school website or drop by to pick them up from the nurse.  Drop them at the allergist to fill out (for a fee), pick them up when they are ready a week later, and make sure they are at school on day 1.  There is a form for each medication along with instructions on how and when to use them, an action plan for how to handle allergic reactions, an action plan for how to handle asthma, and forms that give permission for your child to self-carry their auto-injector/inhaler.  (In addition to the additional set in the nurse's office, which does take it's own form.)

3) Meet with school staff.  This has to be done before day one, so allergy parents need to be proactive!  We start sending notes in the spring to be sure to get face time prior to the start of the year.  We review the 504 or IHP plans to make sure they are up to date and will be valid in the new classroom setting.  We speak with individual teachers to work through any concerns or kinks in setting up a safe environment and safety protocols.  This can involve many meetings and much discussion before plans are finalized.

4) Intensive kiddo training.  We understand that teachers have 24 other kids they are watching and may not immediately notice issues that negatively impact our kids.  We have to train our kids how to self advocate.  This starts in kindergarten!  How to let an adult know if you feel allergic symptoms.  How to notify an adult if you feel unsafe, or see something that could be an allergic trigger.  How to turn down treats and foods that are offered.  How to eat lunch safely.  It goes on and on...

5) Research and plan lunch options.  If the school feels they can accommodate our kiddo, we meet with the cafeteria staff and review safety protocol (or write it sometimes!), research ingredient information, determine if the food is safe and can be kept that way throughout the preparation stage.  If the cafeteria can not accommodate the allergies in question (I know ours could not handle the 15 that I avoid.), we stock up on lunch box supplies and ideas.  Thermos bottles, water bottles, lunch containers, etc. Come with ideas about what to put into the container that the kiddo can and will eat.  Then we address how to seat the allergic kiddo so that safety continues during dining.  (Ever see elementary kids sneeze/cough while eating? I don't have allergies, and I would be worried about the amount of their food sprayed onto my lunch!)

Back to school is a mixed bag.  We want our kids to see their friends, gain a bit more autonomy, and learn new information.  It takes a bit of extra work, and a lot of extra faith.  We count on the village to help prevent anaphylaxis from happening at school, and appreciate every effort that is made with that goal in mind.

Are you an allergy parent?  Tell me what steps I missed!

Saturday, August 16, 2014

Calling all adults with food allergies!

I was recently contacted by a doctoral candidate who is having trouble finding participants to complete a survey on what middle and high school experiences were like for food allergic persons.  The catch is: he is surveying adults and asking them to think back to their experience.  If you are a food allergic adult, or know one, please help by sharing or completing the survey.  Thank you!

Hello, my name is Dre Berendsen, and I am a 4th year graduate student in Clinical Psychology at John F. Kennedy University. I am conducting research, under the supervision of Alette Coble-Temple, PsyD, to explore experiences of those with food allergies, and I am writing to ask for your participation in my research study. The John F. Kennedy University Institutional Review Board (IRB) has approved this study. 

Please feel free to pass on this information to anyone you might know who qualifies.  Thank you very much.

Requirements for this study are:



I am seeking participants for a research project to better understand the experience of individuals with food allergy, including the various impacts of these experiences. 

Participants will be asked to respond to an online, anonymous survey containing approximately 100 short items (about 15-30 minutes).

I hope this research study will contribute to the Food Allergy literature and will provide scientific basis for assistance and intervention for those students with food allergies in the U.S. education system.

Participation is completely voluntary and responses will not be linked with an individual’s identity. You may withdraw from the questionnaire at any time. 

If you are interested in participating, please contact me for a link to the survey or go to: FA Survey

If you have any questions about your rights as a subject/participant in this research, or if you feel you have been placed at risk, you can contact the Director of Instructional Services and Research Compliance at (858) 642-8136.

Friday, August 15, 2014

Lunchbox thoughts re-hashed

I've a few years of practice with allergy friendly school lunch boxes now, and have written a few posts about them.  I wanted to take a minute to re-visit some of those thoughts here, for those of you who have not memorized the content of my other posts.  (I know you have loads of extra time to do such things!)

The down and dirty on packing a lunchbox for allergic kids:

1) If you have an allergen free lunch table make sure to find out if it works a second job.  Moonlighting as a snack table at a Scout meeting is not unheard of, nor is hosting the PTA president, attending after school care as an art table, and various other encounters that may smudge that table's allergy free responsibilities.  Often cafeterias are used for more than just lunch, so find out what happens to the table during those times.  Can it be pushed aside, blocked off, covered up, or cleaned afterwards to avoid lingering residue?

2)  Find out how the allergen free table is cleaned.  Is it first, before the other tables?  This way contamination is not spread from other tables to yours via a contaminated cloth.  Or, even better, does it have a separate cloth and bucket for cleaning? Is bath time only after meals, or does it clean up prior to lunch also?

3)  Make sure your little darling can open everything in their lunch box without help.  Often the little ones are to shy to ask for help, so skip eating that part.  More often the helper has already opened a yogurt, two applesauce cups, and a packet of peanuts that the other munchkins in the room couldn't open.  There is no hand washing between helping kids, so it is possible that the helper may actually be a source of contamination!

4)  In the beginning have your kiddo bring everything home.  Even the trash.  This way you get a realistic idea of what is being eaten. Why pack more than that belly has the time or interest in eating?

5)  Take the lunchbox on a test drive.  Can your child easily open it and take things in and out?  My little one had trouble with the darling princess lunchbox she selected as it was designed to function like a paper bag.  To hard to get to her food without taking everything out.  We found the lunch boxes where the top zips all the way open make it easier to get to what she wants, and provide a surface to eat over.  (Because food that hits the table is off limits.)

Those are my top 5 lunchbox hints for getting started.  Feel free to cruise for more ideas by reviewing my other lunchbox posts!