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Diabetic children tell congressman: Remember a cure for us

By Lois K. Solomon
Education Writer
Posted May 15 2002

WEST BOCA · Rose Marie Pollock visited Coral Sunset Elementary School with a jar full of hypodermic needles.

"A month in the life of a child with diabetes," she explained to visiting U.S. Rep. Robert Wexler, D-Boca Raton.
Her 3-year-old son, Nicholas, was diagnosed with juvenile diabetes about a year ago. The Boca Raton family tests his blood sugar several times a day and gives him an insulin injection as needed to make up for the lack his pancreas produces.

The Pollocks and five other families met with Wexler on Tuesday as part of the Juvenile Diabetes Research Foundation's "Promise to Remember Me" campaign. Children meet with their congressional representatives to tell them about the challenges they face and urge them to help secure more money to find a cure for diabetes, which afflicts 16 million Americans.

Coral Sunset students also watched the dialogue, which took place on the stage of the cafeteria, as part of a lesson on how government works.

Parents of diabetic children say officials are often unfamiliar with the peculiarities of juvenile diabetes. In March, an assistant principal at Eagles Landing Middle School confronted student Nikki Wagner about what she thought was a beeper on her waist. Beepers are not allowed at school. The device was an insulin pump, designed to look like a pager so diabetic children can look no different from other children.

The Wagner family and the others at the meeting asked Wexler to be aware of the difficulties diabetic children face and how important research is to finding a cure.

"This is a situation where additional funding will make a difference," Pollock told Wexler.

Wexler said he sees health-care research as a priority, but the majority of congressional representatives do not agree with him. He said their priorities are military spending and tax cuts.

"Our priorities in Washington are a bit distorted at the moment," Wexler said. "Things like research should be given double and triple resources."

As a Democrat in a Republican-majority Congress, Wexler said he has little control over how money is dispensed.

"Sept. 11 created a different set of needs that didn't seem so apparent on Sept. 10," he said. "But the need for research is still there. The medical needs of children shouldn't be sacrificed in a country as rich as ours."

Student Tyler Notaras of Coconut Creek said he agrees. The 8-year-old was diagnosed at age 5 and said he pricks his finger 15 times a day to test his blood sugar.

"It's a rough, full-time job. I live on a schedule. It rules my life. I can't be spontaneous."

He asked Wexler to tell President Bush about their conversation.

"Mention my name to the president," Notaras said.

On April 19, 1995. my life changed forever. On this day, my six-year-old daughter, Robyn, was rushed into an emergency room in a semi-conscious state. The physicians diagnosed my little girl with insulin dependent diabetes. With her condition clearly identified, I suddenly realized that I had a new mission in life. I needed to learn how to care for Robyn. I had a lot to learn. 

From day one, I began to collect information about insulin dependent diabetes. Every book, magazine and newspaper article was collected and stored inside a large notebook. When Robyn returned to school, I copied and distributed this material to those people who supervised her throughout the day. I spoke to the school nurse, the principal and her teachers. They asked me questions and I answered them to the best of my ability. We would often discuss the articles in my "Diabetes Rulebook." The information in this collection was very technical and it soon became overwhelming to us all. As time passed, I became more secure in the care and treatment of diabetes and my daughters daily routine. Soon with my new more relaxed attitude, I started to rewrite and simplify my "Rulebook." This information was again shared with any individual involved in her life. Of course, this included her teachers. 

I am a teacher. I have a Bachelor of Science Degree in Communication Disorders and a Master of Education Degree as a Reading Specialist. I am fully aware of the responsibilities of today's educators. Teachers today have a very difficult job; they must wear many different hats. The average classroom contains somewhere between twenty and thirty children, with each class composed of children with a variety of "issues." Parents often expect these teachers to fully comprehend their personal situation. This is a very difficult task. 

An abundance of materials are presently available on the subject of diabetes. While they are all quite helpful to me as a parent, many are lengthy and too technical for those who care for my child. Diabetes is a very serious condition, emergencies arise quickly and immediate action must take place in order to avoid any serious consequences. It is my wish that all people who are responsible for my child when I am not present, have a basic understanding of diabetes. They must be prepared to identify all potentially dangerous reactions; and know what course of action to take in the event of an emergency. 

I have created an informative guide to help parents educate the individuals who supervise their children. It describes, quite simply, important issues related to diabetes. Parents/guardians can duplicate the desired pages in the booklet and distribute them to anyone and everyone involved in their child’s life: a teacher, a coach, a scout leader, a religious instructor a baby-sitter or a friend. The booklet includes descriptions as well as several charts and lists that are specific to this individual child. Some school districts have several children with Diabetes in their programs; each child follows a different program in the care of their condition. Each chart must be filled out by a parent/caretaker. This is not a medical guide or a treatment plan. It is a collection of important information. Information that could save a life. Diabetes is a very intricate medical condition. It never goes away. It stays with you 24 hours a day, 7 days a week. But....it can be controlled. My dream to publish this work has become a reality. Now I need to distribute it and get it into the hands of those who can benefit the most from it....our children. 

I have started to contact Companies that distribute diabetes supplies, State Educational Institutions, National organizations, State Governments as well as organizations that focus on Diabetes - in the hopes of getting this publication distributed. You reach so many people, please reach out and let the people know what's available to them.

I was at the American Diabetes Association EXPO (trade Show) on Saturday, 3-16-02. I am happy to report that my book was very well received. I am planning to attend the AADE in Philadelphia in August. 

Thank you for your consideration. I look forward to hearing from you. 

Sincerely,

Elisa Hendel

The following information is from a recent speech I made for the Juvenile Diabetes Research Foundation at BD, in Frankin Lakes, New Jersey. It was a morning meeting with representatives from many different local companies. These companies have come together to fight diabetes. They are all working together for the local Walk to Cure Diabetes, in June, 2002. My daughter was diagnosed with Type 1 (Juvenile) Diabetes many years ago. I found a need for information to be simplified so...I wrote a book. I am trying to get this information to the public. Listen to my story. If you are interested, please contact me: 
Elisa Hendel

Hen House Press, Inc. 
12 Route 17 North, Suite #212 
Paramus, NJ 07652 
201-291-9199 (Phone), 201-291-9177 (Fax)
email: henhousepress@aol.com.

My name is Lisa Hendel. I have three daughters. My 13 year old daughter Robyn, was diagnosed with Type 1 Diabetes when she was 6 years old.

While on vacation in Puerto Rico, my daughter became very sick. At first, a local doctor misdiagnosed her with Strep Throat. After getting the "proper" medication (for strep) she continued to get worse. Soon, she passed out on the floor. Robyn was rushed to the hospital with blood sugar readings in excess of 1000 ("normal" being 70-120). By the time we reached the hospital, she was in a diabetic coma - ketoacidosis. (her blood sugar was > 1000) She spent 2 days in the intensive care unit in hospital in Puerto Rico. Once she was stable, we returned home to New Jersey to Saint Barnabas Hospital in Livingston, to the Joslin Center for Diabetes. It was there that our new life began...a life of learning, a life of ups and downs.

To give you some idea of how an individual with diabetes day compares to an individual without diabetes, I made the simple comparison between my 2 older daughters ages 15 and 13.

A typical day in the life of my 15 year old. 
(she does not have diabetes)

-wakes up 7:00 am
-eats....maybe
-gets on bus 7:20 am
-goes to school
-Lunch 1:00 pm
-gets on bus
-gets home 3:30
-homework, rest, dinner
-dance class
-shower
-more homework
-sleep

A typical day in the life of my 13 year old (Type 1 diabetes). 

-wakes up 7:00 am
-tests blood sugar
-I draw insulin to insure no morning errors
-injects insulin
-.MUST EAT - no matter what...must eat for insulin is injected..needs 
food to work
-gets on bus 7:30 am
-goes to school
-Gym, 1st period, must test blood sugar before exercise, 
possible snack - depends on BS.
-Snack in between breakfast and lunch.
-lunch at school, 11:15, must test blood sugar.
-If BS is high, needs additional 1-2 units of Humalog insulin. 
-If BS is high, she must also test for keytones with a simple urine test.
-between lunch and the end of the school day, may need 
another snack or possibly must test blood sugar again...this depends....
-After school activity (Volleyball, school play...)
-Test and snack around 3:00 pm
-come home, test before dinner.
-Inject insulin - use scale to determine how much to draw into syringe
-dinner - MUST EAT, preferably a balanced meal (ha ha)
-homework
-shower
-Test BS, have a snack before bedtime
-sleep - might have to test again in the middle of the night 



In the 7 years since Robyn’s diagnosis, 7 additional children from 2-14 years old have also been diagnosed with Type 1 Diabetes in our little town of Hillsdale (one moved away a few years ago). 5 are presently in the middle school, grades 5 - 8; and 2 are in the elementary school. 7 children in 7 years! This number is frightening. New Jersey is presently one of the US states with a very high number of newly diagnosed children with Type 1 Diabetes.

In Hillsdale, we are fortunate for we have very supportive educational administration and staff, this includes a full-time nurse at each school site (3 in total). But, let me explain that just because a staff member has had one child with diabetes as a student, does not mean that he/she will be able apply the same treatment options to another child. Please remember each child’s treatment varies. One boy is on the pump, others take 3 or more shots per day. Each child follows a different therapy, different types of insulin, at different times......a completely different approach and don’t forget, what may affect my daughter will not specifically affect another child in the same way.

In the 7 years since Robyn was diagnosed, I have calculated that she has tested her blood sugar approximately 15,000 times (5 <times a day> X 7 <days a week> X 52 <weeks in a year> X 7 <years> .) All 10 of her fingers have calluses from the constant "pricking." (newer technology and new equipment, like the thinner lancets has helped). 

Robyn presently takes 2 - 3 shots of insulin daily. This is equivalent to approximately 6,000 shots of insulin in the past 7 years. (2 <times a day> X 7 <days a week> X 52 <weeks in a year> X 7 <years >).

For the past 7 years, I have collected every imaginable book, article as well as internet info available. After years of frustration in trying to "teach" the teachers about diabetes, I decided to write my own book for parents/caretakers and teachers. It is a compact book, filled with charts and important information on a not so easy to understand disease. It is unique for it leaves many blanks for individuals to personalize the book to their specific treatment program. After many rewrites, I am proud to stand here and say that at this very moment, it is with the printer and should be printed, bound and shrink wrapped and available by next week. 

I try my best not to dwell on the condition of diabetes but it takes a daily toll on us all. I am lucky....my daughter is quite exceptional. She is a good student and NEVER uses diabetes as an excuse for not being able to do anything. In fact, I think this sometimes increases her drive...and forces her to go that extra step. But, she is the exception. I have met many other parents who have expressed concern over their children’s emotional as well as physical well-being. This disease takes its toll not only on the individual with the disease, but on everyone invlolved in this person's life.

Simple routine experiences, are no longer simple. Robyn must always have a pack filled with supplies...insulin, syringes, meter, extra strips, batteries, snacks for Hi BS, snacks for Low BS, glucagon, cell phone. (and she must always wear a medical identification bracelet).

We can never just "run out of the house" for anything. Thought must be put into everything from a walk to a neighbors house, an over-night stay at a friends house or a school trip.

We all worry about our children. Diabetes makes us worry a little more. When a child first goes to school, most parents worry about the social and educational pressures...parents of children with a condition such as diabetes must take this worry one step further....we must worry about our children’s health and the ability of others to understand the intricate details involved in caring for a child with diabetes as well as the ability to know what course of action to take in an emergency. When a child goes on a outing for the first time alone with friends, we as parents worry in general about their safety, as the parent of a child with diabetes, I worry about Robyn's safety as well as her physical well-being...what if she becomes disoriented, what if she gets lost, what if she doesn‘t feel well, what if she passes out...what if.... And for those of you who have older children, I have been told that I will continue to worry...driving, dating, college, drinking, sex...the list goes on. 

Please, do not feel sorry for my daughter for she is fortunate to live in this day and age. Due to the overwhelming support of the many diabetes groups (Juvenile Diabetes Research Association, The American Diabetes Association, The Foundation for Diabetes Research ...) we are certain that the cure is just around the corner. In the past 7 years alone, the care and treatment of diabetes has tremendously changed.

Thanks for Listening to my story. 

EBH

This mother’s love is the Sweetest thing in Daughter’s Life

BY JANIS ADAMS
For Community Life

HILLSDALE - The hills are lush with tropical fauna and there is a soft island breeze blowing that whisks away all the cares of visitors to this Caribbean island. But for one Hillsdale family vacationing in Palmas Del Mar in Puerto Rico, the island setting provided the backdrop for what would unfold into a parent’s worst nightmare.
Steven and Elisa Hendel and their two daughters, Samantha and Robyn, were spending an extended vacation with friends in a quaint villa nestles in a rural part of the island. Six-year-old Robyn was complaining that she felt tired and nauseous. Even after considering the tropical climate, she was consuming what seemed to be an inordinate amount of water.
A doctor was summoned to the villa. After examining the child, she determined that Robyn was suffering from what is commonly known as "strep throat." Antibiotics were administered. A few moments passed and Robyn began to vomit violently. "Then her body wilted," her mother said. "She lay in a semi-conscious state. And, I panicked. There was something terribly wrong with my little girl."
As the Hendel’s little girl lay in ketoacidosis, a diabetic coma, with blood sugar reading in excess of 1000 (normal being in the range of 70-120), her parents fought to comprehend their daughter’s diagnosis. The doctors and nurses were fluent in Spanish but spoke very little English, compounding the frustration of the couple. Think frustration is a better word because the doctors speaking fluent Spanish should not cause anxiety.
Robyn was diagnosed with Type 1 Diabetes, marked by partial organ failure in which 90 percent of the insulin-producing cells of the pancreas are destroyed. People with Type 1 Diabetes must take daily insulin injections.
After a two-day stay in the Intensive Care Unit of the Hospital in Puerto Rico, Elisa began the process, which still continues today, of educating herself as to how to best meet her daughter’s constantly fluctuating needs.
Once Robyn was stable, the family returned to the states. Robyn was admitted to Saint Barnabas Hospital in Livingston, where the Joslin Center for Diabetes is located. While Robyn struggled to acclimate to a new world, often controlled by insulin, Elisa forged ahead to become diabetes literate.

As Elisa continued her research, she found that academic institutions around the nation often provided no Section 504 plan. A section 504 plan is devised specifically for each child and provides an outline of reasonable accommoda- tions that need to be met to have a successful educational experience. This mandated plan falls under the Rehabilitation Act of 1973, which is a part of The Americans with Disabilities Act and the Individuals with Disabilities Act. Failure to comply with these laws, a school may loose their Federal funding. 
Examples of the medical treatment plan enumerated in a 504 list may include: free access to fluids; free access to snacks during class as needed; opportunity; opportunity for glucose testing; details of procedures for treatment; among a long list of others.
Elisa compiled detailed lists, outlining procedures. As she attended support groups and made frequent visits with Robyn to the doctor’s office and to the hospital, she came to a realization: Many parents and nearly all school systems do not know how to adequately meet the needs of a diabetic child or fully understand what course of action to take should an emergency arise. 
Seven years later, Elisa is an expert on the disease. She has done countless hours of research, not only to educate herself and her immediate family but also to educate others, especially those that come in daily contact with Robyn.
The Hendel’s lifestyle has been profoundly changed. "We can never just ‘run out of the house’ for anything. Simple routine experiences are no longer simple. Robyn must always have a pack filled with supplies...insulin, syringes, meter, extra strips, batteries, snacks for HI BS, snacks for low BS, Glucagon and cell phone," said Elisa. "Thought must be put into everything from a walk to the neighbor’s house, to an overnight stay at a friends house or a school trip."
Diet, exercise and insulin therapy have become controlling factors in the family’s life. Robyn monitors her glucose levels throughout the day, wherever she is. Her main objective is to maintain consistent glucose levels, determined by diabetes professionals. Each time Robyn’s glucose reading is taken, the insulin dose must be adjusted to counterbalance her blood glucose test results. To do this, she gives herself insulin injections. 

As the reality of the physical issues faced by her daughter on an hour to hour basis finally took hold, Elisa realized she needed to inform the educators in the Hillsdale School System.
School systems across the nation, Elisa found, were lacking the knowledge to provide a safe environment in which to educate a child with diabetes. Educators were not aware of what to do should a diabetic child have a hypoglycemic (low blood sugar) reaction or a hyperglycemic (high blood sugar) reaction.
An arduous task lay before this determined lady. With an idea quickly taking root in her mind, she set to write a book. What evolved was as much a learning experience for her, as it was an opportunity to provide information to others. 
The result is an informative book that can be used as a tool to educate others and as a guideline to instructors; those dealing with a diabetic child. The book, A Child in Your Care has Diabetes, provides charts and checklists that can be duplicated and filled in, so that necessary information is easily accessible at all times.
Elisa acknowledges that this journey with diabetes is sadly, long from over. But, she knows that the opportunities for her daughter are limitless because of the knowledge she has acquired. Elisa understands that knowledge is power and her resolve is that Robyn will have that power. 
When asked to talk about all her efforts, she shrugs, as if to say that any mother would have done what she did. She realizes that the determination, so clearly evident in her actions, is now a part of her daughter’s life. Robyn penned the following words as a prologue to an account of her life since her diagnosis, "When I think of my life, I often compare it to a novel. It consists of many chapters, and each one tells a small piece of an important story. Without one, it would not be complete."
The story continues.

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