The Most Important Question

Why?

As children, our naturally inquisitive nature prompted us to question everything.  Why do I have to go to bed?  Why do I have to eat my veggies?  Why does the moon come up at night?  Why do dogs have wet noses?

Now that I am a mother, I find myself falling into the trap of answering "Because I Said So."  However, "Because I Said So" is not a good enough answer when it comes to advocating for your child.

As parents, we expect that we should be able to trust the school to always do what is best for our children.  We put our faith in the fact that they are the "experts" and will always do what is "right" by our kids.  We all too often accept "Because I Said So" as the answer to our questions.

You are the only expert on your child.  

If you want something to happen and truly believe that it is possible and best for your child, but the school is not supporting your wishes, ask them WHY.  

If you are faced with a "policy" or standard that does not seem to make much sense, ask WHY it is in place.  

If you don't understand or accept "Because I Said So" as a viable excuse from your school (which you never should!!), ask them WHY they "SAID SO".

Asking WHY does not make you confrontational.  It helps you become an informed advocate for your child.

I was recently in an IEP with a family and was told that in a school of over 800 students, there were no children enrolled who needed services similar to those that the child for whom I was advocating needed. As a result, the family was being asked to place the child in a different school elsewhere in the district where his needs could be met.  I knew that there were other children zoned to my child's home school with similar disabilities and needs, and I wanted to know where all of these children were and what the school was doing about this conundrum.

What did I do?  I asked WHY.

Why are there no other children in this school who require similar services?  Why are there no accommodations in place to support the needs of this child and other children with similar needs?  Why does this child and other children with similar needs have to be unnecessarily restricted and sent outside of their home school because they have additional learning needs to achieve success in the general education curriculum?  

I was met with chair shifting, diverted eye contact, and pencil twirls.  

And the answer I was given told me everything I needed to know: The representatives from the school didn't know why.

After several more rounds of "The Why Game", we were able to secure placement in the child's home school, in the least restrictive environment,  with the supports needed to achieve success.  

While there are no guarantees that asking WHY will always achieve the desired outcome, using this simple three letter word is an important tool to freely use when advocating for your child.  

To be an effective advocate, you don't need to be a legal expert, have additional degrees, or complete extensive training.  The first step in being the BEST advocate for your child is to ask the most important question.  

WHY?

Until you clearly understand the answer and get beyond "Because I Said So", keep asking.  You will be well on your way to becoming the best advocate you can be. 

Food Allergies

Food allergies in children are becoming much more prevalent.  Whether they are simply being identified and diagnosed more, or our children are developing more food intolerances, it is a fact that these reactions can be severe and even fatal.

So what can be done to help protect our children with food allergies when they are out of our sight and in the care of others at school?

The first and perhaps most important thing is to make sure that your child with the allergy understands why he or she needs to avoid the trigger and learn how to most effectively protect him or herself from exposure.  Regardless of the severity of the reaction, your child needs to know what foods to avoid, why to avoid them, how to avoid them, and what needs to be done if exposure occurs accidentally.  Remember that empowering your child is the best and most effective step to successful advocacy.

The severity of the child's sensitivity to the allergen will determine what additional steps need to be taken to protect your loved one.  Familiarize yourself with the school's food allergy policy, if one is available.  You will need to work closely with your child's doctor to clearly understand how the child will react with exposure and what type of exposure will trigger a reaction (ingestion, airborne, etc.).  Once you and your doctor have identified the allergens, exposure factors, and reactions, you can decide what additional safeguards should be put in place to protect your child.

Regardless of the reaction, it is important to make sure the school is aware that your child has food allergies and provide them with an exposure action plan.  You will need documentation from your child's doctor stating the allergens, severity of the reaction, and what systems are affected by the exposure (respiratory, cardiovascular, etc.).

In cases where the reaction to exposure can be severe or life threatening, it may be beneficial to consider implementing a 504 Plan.

Section 504 of the Rehabilitation Act of 1973 is a civil rights law that prohibits discrimination in an educational program or institution on the basis of a disability.  By law, every student with a disability must be afforded a “free and appropriate public education.” A food allergy may be considered a disability under this law.  Public schools, as well as private preschools and daycare centers that receive federal funds, are required to comply with this law.

You will need to contact your school and work with your child's allergist to determine if a 504 Plan is appropriate for your child.  Do not assume that your school will automatically take the right steps to help protect your child.  It is important to involve all interested parties (teachers, principal, special education representative, doctor, school nurse, etc.) and provide clear and straightforward information to foster open and flowing communication.

The following information is from allergysupport.org and outlines how a child with a food allergy may qualify for protection under a 504 Plan.

Children protected under Section 504 are commonly those with ADD, ADHD, OCD, Diabetes, AIDS, Asthma (that does not affect educational performance) and allergy just name a few. The criteria by which a child with severe food allergy is eligible for protection under Section 504 is that the physiological condition / disorder of food allergy affects the respiratory, digestive, cardiovascular and skin body systems. The physical impairment of food allergy could substantially limit breathing during an anaphylactic reaction. In addition, the U.S. Office for Civil Rights U.S., Department of Education formally recognizes “allergy” as a “hidden disability.”

(“The Civil Rights of Students with Hidden Disabilities Under Section 504 of the Rehabilitation Act of 1973.”)

WHAT ARE HIDDEN DISABILITIES?

“Hidden disabilities are physical or mental impairments that are not readily apparent to others. They include such conditions and diseases as specific learning disabilities, diabetes, epilepsy, and allergy. A disability such as a limp, paralysis, total blindness or deafness is usually obvious to others. But hidden disabilities such as low vision, poor hearing, heart disease, or chronic illness may not be obvious. A chronic illness involves a recurring and long-term disability such as diabetes, heart disease, kidney and liver disease, high blood pressure, or ulcers."

(“The Civil Rights of Students with Hidden Disabilities Under Section 504 of the Rehabilitation Act of 19743.”)

HOW DOES SECTION 504 HELP A CHILD WITH SEVERE FOOD ALLERGIES?

The legislators who wrote Section 504 purposely used broad and relatively non- prescriptive language so that the law would encompass a wide range of disabilities. Schools must give children protected under Section 504 an “individualized educational program” with “accommodations.” This program usually takes the form of a 504 Plan. The 504 Plan lists and explains the formal accommodations and modifications that will be made to the public school environment to ensure the least restrictive learning environment (LRE). The LRE must provide equal opportunities for children protected under Section 504 to the maximum extent possible as their non-disabled peers. A 504 Plan for a children with food allergy should have many components to address important food allergy issues so affected children have the best possible chance of staying safe.

One of the most significant benefits offered by a 504 plan is the protection of your child's right to be educated in the least restrictive learning environment (LRE).  This means that your school cannot discriminate against your child on the basis of his or her disability - or allergy.  It legally guides the school towards including your child with his or her peers to the fullest extent possible while still protecting him or her against the allergen triggers.

Do not assume that your school will automatically include your child in the LRE simply because a 504 Plan is in place.

Because food allergies are a relatively new problem facing schools, you will need to be diligent in ensuring that your child is not being unnecessarily separated from his or her peers.  It is not uncommon for schools to be overly protective and restrictive of children to avoid negative outcomes (allergen exposure and reaction) and limit litigation possibility.  Working closely with the school and your child's doctor and maintaining free flowing and transparent communication is the best way to protect your child's rights.  


Remember that only you, your child's physician and your school district can work together to create an allergen exposure plan that is appropriate for your child.


For additional information, please visit the following links:
Allergy Support.org
Food Allergy Initiative