Allergic Living » Gina Clowes

Lesley U. Decision: A Victory for Allergy, Celiac Access

Gina Clowes — Wed, 10 Apr 2013 21:32:43 +0000

A settlement quietly reached between Lesley University in Massachusetts and the Department of Justice is big news, with monumental implications. The agreement lays the foundation for establishing the rights of Americans with food allergy and celiac disease.

Here’s how the settlement came about. A number of students initiated a lawsuit against Lesley University because its mandatory meal plan did not accommodate their medically required food restrictions. Using the guidance of the Americans with Disabilities Act (ADA), the Justice Department sided with the students – a stance that could serve as a precedent for food allergy policies in other institutions.

Rather than face a trial, Lesley University agreed to settle the case with a slew of concessions. The university will now:

• Provide gluten-free and allergen-free food options in its dining halls;

• Allow students with known allergies or celiac disease to pre-order safe meals;

• Display notices about food allergies and identify foods with allergens or gluten;

• Train food service and university staff about allergy-related issues;

• Provide a dedicated space for affected students to prepare allergen-free foods; and

• Endeavor to find vendors that offer food without allergens.

Eve Hill, senior counsel to the Assistant Attorney General for the Civil Rights Division of the Department of Justice, told me in an interview that “many aspects of the agreement will serve as a model for other schools.” She says that “each school should evaluate its food service plan to assess whether reasonable modifications for its students with disabilities are necessary to avoid discrimination.”

Many legal experts have questioned whether food allergies are a legitimate disability, but the ADA Amendments Act (ADAAA), which took effect in 2009, added clarity by broadening the definition of disability.

Hill, who oversees all ADA compliance cases, explains that “a disability, as defined by the ADA, is a mental or physical impairment which substantially limits a major life activity, such as eating. Major life activities also include major bodily functions, such as those of the immune and gastrointestinal systems. This would include individuals with celiac disease and others who have serious autoimmune responses to certain foods, the symptoms of which may include difficulty swallowing and breathing, asthma or anaphylactic shock.”

Some experts on disability issues and the ADA say the amendment removed any lingering doubt that severe food allergies and celiac disease fall under the disability act, and that the Lesley University agreement provides further validation.

“This agreement is one of the most significant things I’ve seen since the passage of the ADAAA toward recognizing food allergies as a disability,” said attorney Tess O’Brien-Heinzen, an expert on 504 plans and issues under the ADA, ADAAA and the Rehabilitation Act. In her view: “It is very clear that severe food allergies constitute a disability under the law.”

“It doesn’t matter that a food allergy sufferer has an EpiPen or can take Benadryl,” O’Brien-Heinzen continues. “Under the amended law, the question of whether the impairment can be mitigated with medication is irrelevant to the determination of whether an impairment is a disability.”

Some parents may resist having their child labeled as “disabled”, but I would encourage you to get past the discomfort. This tiny word might be the key that opens the door to safe accommodations for our children in schools, colleges, and beyond.

Next: A Wakeup Call on Access

Allergy Moms: Let’s Resolve to Stress Less and Schedule in Real Life

Gina Clowes — Thu, 21 Mar 2013 18:47:31 +0000

Spring’s arrival gives us the perfect opportunity to create a life that we love. Our kids only grow up once, and as overwhelming as food allergies can be, we don’t want their whole lives to revolve around their medical condition.

To find room in life for the things that really matter, we often have to remove the things that don’t. So, I’m hoping you’ll join me and resolve to do less this year and make room in your life for the things that you love. Here’s where to start:

Worry less. Look at each issue you’re facing and ask: Can I do anything, within reason, to prepare for or prevent what I’m worrying about? If so, get to work.

For example, perhaps you have a nagging feeling every time that Grandma babysits because she hasn’t been trained to recognize the symptoms of anaphylaxis and to use the EpiPen auto-injector. You can immediately take steps to address these issues.

However if you have trained Grandma, she has your child’s safe snacks and she knows how to use the EpiPen, then you need to let go. Literally, get out and do something to distract yourself or better yet, do something for someone else. When we worry, we’re focused in, on ourselves. Doing something for someone else puts our focus on them.

As author Eckhart Tolle recommends, ask yourself: “What is wrong now right now, in this moment?” Usually, it’s nothing. Worry is about the future. Recognize that by focusing on everything that can go wrong in the future, you ruin your time today.

Read less. On the Internet, that is. Be selective about what you read about food allergies and anaphylaxis. It’s one thing to share a true story to enlighten others on the dangers of food allergies, it’s quite another to devote hours and hours each week to surfing through terrifying stories about anaphylaxis tragedies.

Also, don’t waste your precious moments reading all those hostile comments that inevitably follow an online article on accommodations for food-allergic children. Life is too short. Instead, choose a few favorite sources for reputable food allergy news, and make sure you leave enough time to read something that’s for pure pleasure.

Say “Yes” less. The life coach Cheryl Richardson recommends that we evaluate the non-stop onslaught of volunteer activities, chores, invitations and distractions by using the “absolute yes” test. Before you add another activity to your calendar, ask yourself, “Is this something I absolutely want or need to do?” By saying no more often, you make room in your life for the things you truly do want to do.

Next: More tips for less stress

Staying Allergy-Safe Over the Holidays

Gina Clowes — Wed, 14 Nov 2012 16:36:59 +0000

A food-filled family gathering need not be a minefield for those with allergies. Here are six key steps to safe celebrating.

I grew up in a huge Italian family where love was spelled F-O-O-D. About a year after my son was diagnosed with more than a dozen food allergies, I hosted Christmas Eve. Every table of my house was filled with pasta, cookies and candy. But unlike past family gatherings, this was not a happy holiday.

One niece roamed the house leaking her bottle of formula everywhere; another toddler left a trail of Honey Nut Cheerios. My sister fed her baby a jar of green pea baby food – the very food that had caused my son’s most recent allergic reaction – and left a dirty spoon on my kitchen table. My home became a minefield.

Although I didn’t say anything, my family sensed my tension and anger. They watched me march behind them, picking up napkins, wiping down tables and cleaning up cookie crumbs before my allergic toddler could get to them.

It wasn’t long before my sister confronted me. “You’re so uptight. No one feels comfortable here anymore.” My emotions spilled over. How dare they be mad at me! They were being insensitive and endangering my son’s health. I didn’t speak to my sister for months.

That was nine years ago. Today, I see things differently.

Back then, I expected my family to understand a lot more about food allergies than they did, and yet I never specifically explained to them what I needed. It’s our job to educate others on exactly what’s necessary to keep our children safe. We, not our relatives, have to establish boundaries and draw lines. Today, I put my son’s need for safety and inclusion and my own need for keeping a manageable stress level at the top of my holiday priority list.

Next page: Gina’s Essential Tips for the Holidays

Help the School ‘Get’ Food Allergies

Gina Clowes — Wed, 15 Aug 2012 20:53:49 +0000

What would you do if your child were asked to rinse out his mouth twice a day before entering his classroom? No, this isn’t a trick question or a bad joke.

Here’s what parents of students at a Volusia County, Florida elementary school did in March 2011 when they were told that their kids would have to make this accommodation to ensure the safety of a first grader with a peanut allergy: they protested. They literally picketed, handed out flyers and called the media.

The uproar affected me deeply because a similar controversy brewed in my district several years ago – and it involved my son.

Before Daniel’s first day of kindergarten, I developed a plan with school administrators to keep him safe from his allergens. Although we made every effort to keep the impact on other students to a minimum, some parents saw the restrictions on certain foods in the classroom as an infringement on their rights. In fact, one mom was so miffed that she rallied a group of parents and they protested at several local school-board meetings, inviting the media.

School administrators went to battle for me, and in the end, not a single word of my son’s plan was changed.

Since that time, I have worked with thousands of allergy parents navigating the school system, trying to help others “get” food allergies. Here’s what I’ve found works – and what doesn’t.

Tell the truth. Never exaggerate. A significant portion of people still don’t believe that food allergies are real. When we say things like, “If she touches it, she will die,” it lessens our credibility. If the truth is, “If she ingests even a trace amount of this food, she could die without proper treatment,” then say that. The truth is frightening enough.

Be meticulous with your words and language. When we use analogies like the “loaded gun,” we may be written off as anxious or crazy. Most people simply cannot compare a sip of milk or a bite of a cookie to a loaded gun. It doesn’t matter if we’re right. It matters that they can hear us.

Share a story. I tried for years to explain food allergies to my sisters. But it wasn’t until I shared Sabrina Shannon’s story through her radio documentary “A Nutty Tale” that they truly understood. One sister called me immediately afterwards and said, “Oh my God. So this is what you are dealing with.”

Sabrina died from an allergic reaction to a trace amount of dairy on French fries served in her school cafeteria. There is no argument with this story. And every parent on some level can relate to the fear of losing a child.

Next page: On the same page with school officials

Allergy-Safe Halloween Treating

Gina Clowes — Thu, 15 Sep 2011 15:18:58 +0000

As a child, I couldn’t wait for Halloween. Transforming into a princess or superhero was thrilling, and the best part was coming home and dumping my loot onto the kitchen table.

As a parent of a food-allergic son, however, I quickly realized that celebrating Halloween could pose a serious health risk. Still, I didn’t want him to miss out on the same thrills and giggles from the beloved autumn night. So over the years, I’ve come up with a few tricky tips to keep the fun in Halloween for children with food allergies.

Have a nice dinner first. On a full stomach, there will be less temptation to sneak a piece of candy.

Stash a few pieces of safe candy in your pocket. When the other kids inevitably indulge along their route, your child will have something safe to enjoy and won’t feel left out.

Keep the essentials with you. Don’t leave home without a cell phone, flashlight, wet wipes and, of course, the epin- ephrine auto-injector.

Consider supplying a few neighbors with pre-filled sealed treat bags. When your child rings the doorbell, the neighbor can pass out the safe loot and you’ll be certain that he’ll get to keep some of what he has collected.

Choose costumes with gloves if your child is extremely contact-sensitive.

At home, pass out toys. I usually hand out low-cost toys or trinkets. If I do buy candy, I choose something like Smarties, which is safe for multiple allergens. (Keep in mind, though, that Halloween-sized candy sometimes contains different ingredients than its full-size counterpart, so read the labels even on familiar brands.)

And what about my favorite part of the evening: coming home and dumping the candy stash onto the kitchen table? Here’s how to handle it:

0-2 year-olds: Forget the candy. An adorable costume, a juice box and a few safe cookies will do the trick. At this age, it’s a treat just to answer the door and pass out trinkets – as long as the trick-or-treaters aren’t scary monsters.

2-4 year-olds: Most kids this young can be fooled by one of my favorite tactics: the “Bait and Switch.” Give your child a plastic pumpkin for trick-or-treating. When you return home and while your child is busy washing his hands, swap the plastic pumpkin with an identical pumpkin that you filled ahead of time with safe treats.

Next Page: Ages 5 and up