The elevator to success is out of order. You'll have to use the step at a time. ~Joe Girard

Spreading Awareness

My purpose in writing this blog is to spread awareness and provide support to parents of children with and without special needs. I have one child with a Learning Disability, more specifically, a Visual Processing Disorder including Dysgraphia and another child with a disease called Eosinophilic Esophagitis, an allergic white blood cell disease that attacks the esophagus.

Tuesday, May 25, 2010

Learning Disabilities and End of Grade Standardized Testing

I always dread the end of the school year.  There is so much pressure put on students regarding end of grade standardized testing.  The teachers have pressure put on them for their students to perform well, so many of them in turn put pressure on the students.  This can cause even the best of students stress and anxiety.  So what about the children with learning disabilities?  Research has shown that these students experience more stress and anxiety on tests than their non learning disabled peers.  So imagine having to cope with your disability as well as an added amount of stress.

I personally don't agree that all children's competence or knowledge can be assessed by the format of standardized tests.  As we have hopefully become more aware over the past several years, children learn differently and need to be afforded differentiation in instructional and evaluative strategies.  Not all children learn through pencil and paper question and answer (especially the LD child), which is the format of the standardized tests.   This being said, standardized end of grade tests are the reality and we need to know how to prepare our children best for them.

Friday, May 21, 2010

In the Hospital: National Eosinophil Awareness Week - Days 5 and 6

Well, it seems fitting that we have celebrated days 5 and the beginning of day 6 of National Eos Awareness Week in the hospital.  It is a scheduled visit.  Yesterday, Andrew had his 8th endoscopy, as well as his first ph probe, which is still in as I type this entry.  Six of those 8 endoscopies have been done in the last year and a half.  That means six trips to the hospital, six days of missed school, six days of anxiety (at least for Mommy, if not for Andrew), six times under anesthesia, six scopes being put down my baby's esophagus...none of this without risk, but all of this to find answers, put my child into remission and help him live a healthy more normal life. 

As I sit here and watch him play the hospital video games with  the probe in his nose, he seems so content.  I know, that seems odd, doesn't it?  I am so lucky, because my son is really such a trooper.  I truly hate this disease, but when I look at Andrew, I am reminded that I have so much to be thankful for.  He is such a brave, strong kid.  He rarely complains, even though he has not had a single bite of food since January 2 of this year.  He drinks eight of his Neocate Splash juice boxes each day and never complains.  Even while on those, he regurgitates after drinking them more than I realized.  With this probe, he has to push a button each time "junk comes up his throat" (when he regurgitates), which has been at least 30 times a day...I've lost count.  But still, he never complains.  He wakes up from a scope and is happy.  He had to stay in a hospital bed all day with a computer attached to him because of the probe, but he didn't complain.  His IV hurt, he told me, I told him it had to be there and would feel better when he was sleeping and he went to sleep.  Some children may not be so calm and cooperative. 

So if we have to fight this disease, I'm glad I have Andrew to show me how to be brave and patient.  He is an amazing child that has to deal with more than a child (or an adult for that matter) should, but he does so with such grace and courage.  I learn so much from him.  Andrew, you and Madison are my heroes, and I love you dearly!

Wednesday, May 19, 2010

Thank you

Wow! The week is only half way through and yet, I am already so touched by all of the support our family has gotten for National Eosinophil Awareness Week. I have family and friends, old and new, that are participating in the activities that I have listed on this blog and Facebook. My niece went out and bought a pink shirt just so she could write "I am wearing this shirt to raise awareness for eosinophilic esophagitis disease" on the front and then "for my little cousin Andrew" on the back." She, as well as other friends, have passed out dum-dums. Friends and family have posted information on Facebook each day. We even had a former preschool teacher contact us to write an article about Andrew to help spread awareness. People are good. It is amazing how people can come together for a common cause if you just ask. We are so blessed to have so many wonderful people in our lives.

So thank you to everyone that is helping us spread the word this week. It has touched my heart and means more to me than you can know. Andrew is so lucky to have so many people who care about him.

Tuesday, May 18, 2010

Eos Awareness Week: Day 3

Did you know that all of the funding for Eosinophilic Disorder Research comes from private providers. The National Institute of Health currently provides $0 in funding for research for these diseases that are rapidly on the rise.

Today is the day to PARTICIPATE in Eos Awareness Week. A few suggestions given by are:
*VIRTUAL WALK – Encourage those in your community to participate in APFED’s

National Eosinophil Awareness Virtual Walk. Get together some friends or your local
support group, Register online, collect pledges, and then meet at local park for a
“Walk” and social event.
*SIGN UP: Take the day to commit to participating in an APFED event, like

attending the conference this summer. Get registered at: APFED 2010 Conference
*ATTEND A LOCAL APFED EVENT: Check the Fundraising Page of the APFED

website to see what events are planned in your area and show your support by
attending. The list will be updated as events come in.
*WEAR YOUR APFED SHIRT: A simple way to participate is by wearing your

APFED t-shirt. If you don’t have one, you can purchase one by visiting the APFED

Monday, May 17, 2010

National Eosinophil Awareness Week - Day 2

As I had mentioned previously, this week, May 16 through May 22 is National Eosinophil Awareness Week.  I am going to try to share different videos, stories or activities throughout the week in celebration of this week.

My first entry is an article that I wrote for CNN ireports:

Life Without Food:  National Eosinophil Awareness Week - May 16 through May 22

May 16 – May 22 is National Eosinophil Awareness Week. What is that you may ask? My son suffers from the most common Eosinophilic Gastrointestinal Disorder (EGID), Eosinophilic Esophagitis (EE). I will try to paint you a picture…

Think about food…how many times you eat each day, how much you enjoy the smell as it is being prepared, the anticipation of a favorite meal or going out to a restaurant, the flavor of your favorite food when it touches your tongue, your morning cup of coffee, the sense of togetherness you enjoy when you share a meal with family or close friends, the excitement you or child gets when they see and then bite into their birthday cake, holiday meals with loved ones, taking a spontaneous trip to the ice cream parlor with someone special on a hot summer day…and the list goes on. There are so many ways we enjoy food as an individual and as a sense of community. Now, imagine being told that you can no longer eat food. You have to receive all of your nutrients from an amino acid formula that contains no whole or partial proteins. A formula, I might add, that is so unpalatable that most children that have to be on it have to take it through a feeding tube. Imagine you have to do this because the food that is supposed to sustain you and keep you healthy, makes you extremely sick.

This is how my son and many other children with Eosinophilic Disorders live their lives each day. My son suffers from Eosinophilic Esophagitis (EE). EE is characterized by inflammation of the esophagus with an abnormal number of eosinophils. An eosinophil is a type of white blood cell associated with allergies, parasites and cancers. In my son’s case the elevated levels are caused by food and possibly environmental allergies. Symptoms vary by case, but my son started off with reflux that did not get better with medication and chronic stomach pain. As time went on he had chest pain, throat pain, regurgitation 20-40 times a day, and vomiting after eating as well. He also has had chronic sinus infections since he was an infant and continues to suffer from croup during winter months.

EGIDs are considered rare diseases, but are on the rise. According to an article, “Looking Back on 2009” by Wendy Book, MD in EOSolutions Winter 2009, [the apfed (American Partnership for Eosinophilic Disorders) newsletter], a recent study estimates 158,700 people suffer from EE and 85,000 people suffer from eosinophilic gastroenteritis and colitis (EG-EC). Also stated in EOSolutions, EE has now been recognized as one of the most common causes of food impaction and difficulty swallowing in adults. Even so, these diseases often go misdiagnosed or mistreated for years due to lack of in depth knowledge of the disease by many doctors and specialists. There is no cure for these diseases, and they require ongoing treatment, management and procedures. The only way to test for and monitor them is by performing endoscopies with biopsies. Many patients are forced to travel hundreds of miles to a facility that specializes in eosinophilic disorders to ensure proper treatment. Therapies include food elimination diets, elemental formula diets and/or medications such as steroids and/or PPI’s. Many families, after getting proper care realize that they can’t treat their child with the one thing that will make him well (elemental formula), because most insurance companies don’t cover it, and the monthly cost can be close to many people’s mortgage payments.

At present, even with the rapid increase in prevalence of EGIDs, the National Institute of Health (NIH) allocates $0 in funding for Eosinophilic Disorders. It is of utmost importance that doctors and scientists are afforded the funding they need for important research that can lead to better lives for the many people and families affected by this disease. I know my son would enjoy being able to blow out candles on a real birthday cake one day, not one made of boxes, but this will only be possible through research that will help find a cure.

Help us celebrate National Eosinophil Awareness Week by spreading the word and visit to learn more about Eosinophilic Disorders or to make a donation.

Tuesday, May 11, 2010

Special Needs Awareness - Follow Up

A few weeks ago I posted an entry on special needs awareness.  My Parents of Special Needs Children support group at church had been asked to do a presentation at the PW (Presbyterian Women) Luncheon on children with special needs.  As we prepared for this presentation, we decided that each of us would give personal quotes that would be displayed on tent cards at the tables explaining our thoughts or a specific situation we have experienced raising our children.  As well as that, two of our members would speak.  The first is a retired special education teacher that gave a brief overview of the vast special needs and disabilities that exist.  She emphasized that only 20% of disabilities are visible.  The rest of these children look just like any other child.  The second member to speak, Eileen Koehler, is the mother of 3, her oldest having Asperger's Syndrome.  I was so touched by Eileen's speech, I asked her if I could share it on my blog.  She was kind enough to agree.

                                                                        Eileen's Speech

Hello, my name is Eileen Koehler. I have been a member of DCPC for a little over a year. I have three boys, Thomas 12, Henry 9 and Owen 7. I have heard many wonderful things about the staff of the DCPC preschool and have witnessed many acts of love and compassion that all the volunteers and so many members give to all the children. DCPC members give so much of their time and talent for our children and I am so very grateful.

I have been asked to speak a little about the special needs children here at DCPC. All the diagnoses that you see on the poster boards were given to children who are members of this church. The quotes are directly from members and express what they have experienced either within the church community or outside. I realize that these diagnoses might seem trendy or new fangled. But let me suggest that we consider all the scientific advancements made in medicine; and how we readily applaud the increased chances of survival for certain types of cancer or the improvements in the treatment of diabetes, and so on. So, logic dictates that we should also applaud the advancements made in neuroscience that can offer better explanations for many child behaviors that were not known before.

Since “special needs” represents many different challenges; from cognitive to medical difficulties, I asked a mother if there was one thought that I could convey to you that would encompass what our families wish and it is this…that because we are human sometimes it is easier to look approvingly at the well behaved, self possessed child and otherwise be judgmental of the child (or the parent for that matter) that is pulling away from their parents’ touch, not responding to their name or seemingly refusing to follow instructions, avoiding eye contact, unusually reserved bordering on rudeness, bumping up in line, or a little moody because they know they cannot fully enjoy a church event due to medical issues. Whether it is genetics or the circumstances surrounding their birth, it is at that very moment when we are challenged to remember they were created by God exactly as they are and they face adversities that, in many cases, are unseen to the naked eye. I don’t know if Jesus had special needs children in mind when he said in Matthew, Chapter 18-5, “If anyone takes in a child like this for my sake, he takes in me”. But, maybe they are God’s little messengers to remind us that when it is hardest to love, that is when love is needed the most. It could be God’s way of asking us to meet that challenge and so these children are a gift from Him to bring out the best in ourselves. I remember when a physician very bluntly said that more was going to be expected of us as parents. More patience, different parenting methods, better understanding of child development, more informed about alternative educational techniques. I felt so angry….I think of myself as average and I didn’t want the expectation of being some bottomless pit of patience and a possessor of tremendous insight into child behavior. I was prepared to be a slightly improved, lovingly well-intentioned, but flawed parent much like my own mother! Even siblings of special needs children sometimes have difficulties because so much attention is given to one member of the family. They cannot articulate what they feel so they may act out in public. There is a story for all this, we landed in Holland.

If you had the chance to read Emily Pearl Kingsley’s “Welcome to Holland”, it expresses very well what our lives feel like. When you realize your child is different or when you officially receive a diagnosis, Kingsley likens the experience to having your vacation plans drastically changed from a wonderful trip to Italy to unexpectedly landing in Holland…permanently, forever. The portion that resonates with me in relation to religious faith is “But everyone you know is busy coming and going from Italy and they’re bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That is what I had planned. The pain of that will never, ever, ever go away because the loss of that dream is a very significant loss.”

That is from the viewpoint of a parent; my feelings of loss…a bunch of teenage boys coming over to the house to hang out with Thomas. All the parents here of special needs children can tell you something about their lost dream. And make no mistake, as those quotes show; we have some painful stories to share. But we also are adults and have our faith and each other to help sustain us. We need and appreciate any support we receive from all of you. However, that passage also can represent the feelings of the child who is, or will someday be, cognizant of their separateness from their peers. What about their lost dreams of party invitations, play dates, having their name called in a friendly way to join a game, having a girlfriend or boyfriend, meeting up with a bunch of kids after a movie and eating in the mall food court…but can’t because they need a special diet. They spend a lot of time at doctor offices and therapy sessions. They too can see the disapproving looks when they “don’t fit your idea of normal”. For them, like landing in Holland “that pain will never, ever go away”.

So I think to myself, maybe it is not about what I need but what our children need from DCPC, they need you. As parents we can give them all the love we have but we won’t always be there during some of the most challenging moments of their lives whether in the classroom, on the school bus, on the playground and further on in their lives when they are in college and in the workplace. It is now, in their youth, their experiences here with you at DCPC that the development and growth of their faith in Jesus’ love, as His love is expressed through your kindness, that is going to be so very crucial for their future. Because it is this very faith they are going to need when they try to find their way in a society that can lack inclusivity and even be outright unkind. They are going to need strong religious faith to sustain them when they witness all the wonderful experiences other children continue to have in Italy; the times when they feel alone and rejected, when they are tired and faced with numerous medical procedures, when they feel set apart because they need special classes to help them keep up with their peers socially or academically. So besides their own families, where else will they experience the welcoming and unconditional love of Jesus, if not here at DCPC…from all of you? We know that they can find sanctuary here and can truly believe in the love of Jesus Christ through each of you and your family’s patience, your smile, and your kind words of encouragement.

I would like to conclude with something from Matthew, Chapter 18- 10, “Do not think badly of these little children. I tell you this. They have angels in heaven. And all the time their angels can see the face of my father who is in heaven.”

Thank you Eileen for sharing this with us.  It truly gives an insight into the feelings and thoughts of us as parents of children with special needs.

Tuesday, May 4, 2010

Eos Awareness Week May 16 - May 22

Our son, Andrew suffers from an Eosinophilic Gastrointestinal Disorder. May 16-22 is National Eosinophilic Awareness Week, and we would like for you to join us in raising awareness.

Take a minute and imagine a life without food. Think about a life with no pancakes, no cheeseburgers, no birthday cake, no cookies, no morning coffee, or no sweet tea, nothing to chew on for breakfast, lunch, or dinner. Your nourishment comes from an elemental formula (which tastes like it sounds) made up of amino acids and no food proteins. Can you imagine how a holiday meal would be? Could you imagine a life without food? What if one of the things (food) that is supposed to sustain your life makes you severely ill?

That is how many children with Eosinophilic Disorders live every day - without food.

May 16 through May 22 is National Eosinophilic Awareness Week. Eosinophilic Disorders are somewhat rare white blood cell disorders where the body misinterprets food as if it were a parasite and sends eosinophils, a type of white blood cell, to attack parts of the body.

Our son, Andrew suffers from Eosinophilic Esophagitis, the most common of these rare diseases. When he eats certain foods or is exposed to environmental allergens, his body sends eosinophils to his esophagus where they attack and damage the tissue. This disease causes chronic chest and tummy pain, vomiting, gagging, and other symptoms for him. There is no cure for eosinophilic disorders and no good treatment. The current treatments are steroids and/or the elimination of foods (in his case all foods) from the patient’s diet. Andrew is currently on an elemental only diet.   He gets all of his nourishment from elemental
formula. He has not had a scope free of eosinophils or damage to the esophagus, therefor he has not
been able to add back, or trial, any foods.  Very few doctors are even aware of the disease or how to
manage it. Andrew regularly goes to Levine Children's Hospital  for endoscopies with biopsies, tests, and
doctor appointments.

At this time, the National Institutes of Health designates $0 in annual funding for research for Eos Disorders. Fortunately, some Congressmen have stepped forward and are trying to help change that. However, we need much more congressional support to fund the research that is needed to advance the management of the disease and ultimately find a cure.

You can learn more about Andrew's story and EE at my blog

If you would like to learn more or make a donation for research in Andrew's
name, go to:

If you would like to participate in National Eos Awareness Week, here are some things you can do:

Sunday, May 16: Send out mass emails to your friends and/or post on Facebook linking the above sites. Feel free to share any information from above.

Monday, May 17: Wear hot pink or purple (the color of eosinophils in biopsy slides)

Tuesday, May 18: Hand out dum dum suckers to your friends and coworkers. Many kids who have Eos disorders cannot eat anything with food proteins. However, dum dum suckers are safe because they only contain sugar and artificial ingredients. For many kids, this is their only safe food other than elemental formula.

Wednesday, May 19: Please send emails to your Congressmen reminding them that this is National Eos Awareness Week.

Thursday, May 20: Contact me if you would like to sample the elemental formula that Andrew has to drink each day.

Friday, May 21: “Eat like Andrew for a Day Challenge”. Even though Andrew can only have elemental formula, for today, we will pretend he has a few safe foods.  Following is an example of a diet for a child with Eosinophilic Esophagitis, so on this day, do not eat anything but grapes, potatoes, pears, pork, rice, and carrots. Do not drink anything other than regular koolaid or water. Make sure you read every word of all labels, and there’s no way you can eat out in any restaurant due to cross contamination. The slightest trace could make Andrew very ill, so don’t take any chances.

Saturday, May 22: Take a few minutes to let Andrew know, through a comment on my blog (, how the “Eat Like Andrew for a Day” challenge went for you.

Thank you for your time,
Ginny and Greg Barton