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, February 23, 2010

Taking Care of Yourself (as a Parent)

Tomorrow is Wednesday.  I look forward to Wednesdays and dread them all at the same time.  It's one of those days when I just don't stop, and by the end of the day (sometimes by the middle of the day), I just want to crash. 

A Wednesday at our home starts at 5:45 am.  I start getting ready, because this is my volunteer day at school, then I wake up the kids.  It is my day to carpool because I volunteer in Madison's class at 7:00 am.  I am usually in her classroom until 7:45 or 8:00, then leave to help in the media center until 9:00.  At that time I go to Andrew's classroom to volunteer until 10:15. 

I cherish the time I get to spend in my children's classrooms.  As a former teacher, it enables me to use my skills, but also be a part of my children's education.  It also allows me to see how both of my children are coping at school with their different needs.  Madison and Andrew are always so excited for me to be in their rooms.  I know this will not always be the case, so I am savoring it while it lasts.  Even so, this is the beginning of an extremely taxing day.

Sunday, February 21, 2010

Elimination Diets for Kids with Eosinophilic Esophagitis

Our world revolves around food.  Most events-- family and friend gatherings, holiday get togethers, birthday parties, class parties at school, after game celebrations, special treats for positive reinforcement, and just having a nice meal, all include food.  Food is something we all have in common.  We use food as a way a to socialize with family, friends, even co-workers and acquaintances.

What do you think you would do if one day you were told you could no longer eat your favorite foods.  Let's say you really enjoy that bowl of Corn Flakes with a nice cold glass of milk each morning.  Or you look forward to that steaming cup of coffee with cream.  Perhaps you really enjoy eating yogurt and a bowl of fruit, say strawberries or grapes for lunch.  And how about that grilled chicken or salmon for dinner with a nice roll.  And if you feel like it during the day and don't want to snack, you might grab a piece of chewing gum or suck on a mint.  Now imagine that you can't eat any of these items among many, many more.  How do you think you would react?

So many children with EE are on either elimination or elemental diets.  This can be such a scary, frustrating and overwhelming time for these children and their families.  When we found out what foods Andrew was first going to be taken off, (wheat, chicken, milk, fish, and treenuts) I remember feeling devastated, overwhelmed and so sad for my son.  However, at the same time, I was hopeful that this diet was going to put us on the path to remission.  But my feelings were not the feelings that were most important...there was this 6 year old boy that was being told he was not going to be able to eat his favorite foods anymore.  No more milk, ice cream, cheese, bread, and so many more things that you would never imagine that have these ingredients hidden in them.  Going to restaurants would have to be limited, birthday cake at friends parties was a no-no, he would have to bring his own snack to his basketball games, and on and on and on.  So I asked Andrew how he felt about having to go on this new diet and his reply amazed me. "I'm a little bit sad and a little bit happy.  I'm little sad because I wont be able to eat some of the food I like, but I'm a little happy because I will get to try new foods."  He about brought me to tears.  What  a mature response for a little guy, and how blessed we are to have such a wonderful son.  So then it was my job to do research, buy cookbooks and learn how to change his diet and make his food, as well as our entire family's dinners "Andrew safe".

Thursday, February 18, 2010

Homework with a Learning Disabled Child

Raise your hand if you like to do homework.  Hmmm, I wonder how many people raised their hands.  And that's probably for the "average" person.  Now imagine that you have a learning disability and the homework that takes your friends 30-45 minutes to do takes you 2-4 hours to do.  This is what it is like for many children with learning disabilities, including my Madison.  Then add 45 minutes of reading on top of that.  Sound like much time to be a kid?

On an average day, Madison gets home around 2:15.   She comes in the door, puts down her bookbag, takes out her binder, gets a snack and sits down to begin her homework.  She has a reading and math pack for the week, as well as spelling, vocabulary and usually either a story from her reading book to study for a test on Friday, or a novel to study.  The reading pack consists of worksheets that include passages that she has to read and then answer questions, vocabulary, grammar, etc.   Reading the passages and worksheets takes her twice as long as most children.  When she needs to write answers down, we have to go through her answers together,( not for the content, but for the spelling) edit, and then she has to correct it.  Although she loves math, it can be time consuming and difficult for her as well for the same reasons.  For these reasons I have to be by Madison's side for the duration of her homework.  By the time we finish her homework it is dinnertime...anywhere between 5:00 and 6:30.  And let me assure you that she is not the child that keeps getting up, doesn't focus and fidgets.  She is determined to get it done because she wants to be finished.  That's not to say that some afternoons are not interrupted with tears because she is frustrated that it takes her so long and she has so much to do.

Sunday, February 14, 2010

Andrew's Food Free 8th Birthday

Wow! My baby is 8. Birthdays are always such a big deal for kids. They anticipate their party for months...the cake, who they will invite, what the theme will be, the cake, the treat bags, the games, oh, and did I mention the cake?

Well, cake means food, and this posed a challenge for Andrew's party this year due to his Eosinophilic Esophagitis (EE) and elemental diet. Did no food have to mean no cake? It is our tradition to have birthday parties at our house. The kids choose their theme, I frantically come up with activities and snacks that go along with said theme and of course bake and decorate the cake myself. Add kids, and voila...birthday party.

But what happens when you are celebrating a birthday for an 8 year old boy who has been taken off all food (except pure sugar). I have to say my husband and I were not entirely thrilled with the prospect of planning Andrew's birthday party this year. As we thought about what he could do, we mentioned having a bowling party to him. We thought this may be a venue that would be less focused on food with all the excitement and activity going on. Andrew was excited by the idea, especially when we mentioned that they would also be able to play laser tag. Okay, party planned for me...the bowling alley takes care of everything. Boy is that strange for me.

Now that the party was planned, I just couldn't stand the idea that Andrew wouldn't have a cake. So I decided that he would have a cardboard cake made out of individual boxes. I then painted the boxes the best I could to look like a cake. I found "Happy Birthday" candles attached to toothpicks that I inserted into the boxes so that he would have candles to blow out. Inside each box was a sandwich bag of home spun, plain sugar cotton candy. As I mentioned before, the only thing that he can eat is pure sugar. So he is lucky enough to have a cotton candy machine so that I can make him "safe" cotton candy.  (An alternative to using cotton candy if you truly want a "food free cake" would be to use the boxes as the "goodie bags" and fill them with fun treats for the kids.)

I did not tell Andrew I was going to do this. He knew he couldn't have a cake, and being the trooper that he is, he was okay with that. Andrew was excited when we finally revealed the cake to him, and he realized that he would have candles to blow out. I'm not sure all of his friends were thrilled with my creation and the contents of their boxes, although they were all polite and understand Andrew's diet. However, making my son happy and feel somewhat "normal" on his birthday was my main goal. If I accomplished that, then nothing else matters.

Happy Birthday (really tomorrow) Andrew! I love you!

Just another aspect of living with EE.

Wednesday, February 10, 2010

Eosinophilic Esophagitis

Boy, this is a hard topic to write about. I still don't understand all the facets of the disease myself. For that matter, neither do the doctors.

The definition of Eosinophilic Esophagitis (EE) is an allergic inflammatory disease characterized by elevated eosinophils in the esophagus. Okay, so what is an eosinophil (eos)? It is a type of white blood cell that is an important part of the immune system which helps fight off certain types of infections (among other things). Many problems can cause high numbers of eos in the blood, but in Andrew's case it is caused from food and possibly environmental allergies.
As written on the American Partnership for Eosinophilic Disorders (APFED) website,
Eosinophilic esophagitis is characterized by a large number of eosinophils and inflammation in the esophagus (the tube connecting the mouth to the stomach). These eosinophils persist despite treatment with acid blocking medicines. People with EE commonly have other allergic diseases such as rhinitis, asthma, and/or eczema. EE affects people of all ages and ethnic backgrounds. Males are more commonly affected than females. In certain families, there may be an inherited (genetic) tendency.
In individuals with EE, the eosinophils cause injury to the tissue in the esophagus. EE can be driven by food allergy or intolerance: most patients who eliminate food proteins from their diet (by drinking only an amino-acid based formula) improve.

Monday, February 8, 2010

Myths about Learning Disabilities

Although I knew for some time that something just wasn't right when it came to Madison's retention skills of written or visual material, when the official result came in, they still completely knocked the wind out of me. I was overcome with emotion and thoughts of what this meant she might not be able to do. Will she ever read as fast as her friends, will she be able to play "Around the World" math, will she go to college? All my knowledge as an educator flew out the door, and I actually went through what I would say was a mourning period.

It took a little while, but I passed that stage (with the help of family) and moved on to the "What do I do to make this better?" stage. After all, she was still the same child that she was the day before, she just had a new "label". Knowing that she had that label didn't change anything, it just now gave me the power to get her all the help and resources she would (and does) need to be as successful as she possibly can.

I was a teacher for 8 years before I had children. My mom was also a teacher. She actually taught self contained special education. So I had experience and knowledge about children with learning disabilities (LD). I have always known the difference between myths of LD and facts of LD. However, it affects you much differently when the LD child is your own. People misjudge and make judgements. They misunderstand and jump to conclusions. So, I hope to clear up some of the myths about learning disabilities here.....

Sunday, February 7, 2010

A Life With Eosinophilic Esophagitis -- Andrew's Story

Andrew is a gifted, sweet, all boy 8 year old. The day he was born was another one of the most precious days of our lives. Besides the fact that he was huge, 10 lbs. 9oz. he was perfect. Madison fell in love with her "Ohjew" immediately.

Andrew was an extremely fussy baby. That may actually be an understatement. He cried most of time and spit up constantly. Madison had never spit up, so I didn't realize that this might not be normal. Finally when he was about 4 months a friend told me she thought he may have reflux. So I spoke to the pediatrician a couple of months later and she sent us to a pediatric Gastrointerologist (GI). He agreed that Andrew may have reflux, said babies usually outgrow it by 9 months and put Andrew on some meds. By 9 months he still had not outgrown the spitting up and was still quite a fussy baby. We went back to the the GI, who encouraged us to continue the medication, but now informed us that most babies outgrow reflux by age 12 months.

By 12 months Andrew would still spit up and could still be fussy. I would (and still do at times) call him lovingly, my temper tantrum baby. After he turned a year, we stopped giving him medication. The spitting up eventually began to subside around 18 months. However, during this time he would have chronic sinus infections and seemed to stay sick most of the time. He was (and is) prone to getting croup as well. I remember many nights sitting in the bathroom with the hot water running to produce steam, then either taking him outside in the freezing night air, or putting his head in the freezer if the temperature outside was not cold enough.

At one point the ENT told us to take him off all milk products to see if a milk allergy was causing his sinus issues. We did this for a month with no results. He spent a good portion of his first 4 years on anti-biotics.

Friday, February 5, 2010

Madison's Journey--Living with a Visual Processing Disorder

Madison is a bright, sensitive, caring 9 year old girl who is growing into a beautiful young lady. When she was born, as most mothers say, it was truly one of the happiest days of my life. She was a wonderful baby...always happy and smiling. She met most of her milestones on time, although she didn't crawl until she was about 10 months old. However, she walked at 12 months and kept cruising along. She talked early, had a large vocabulary, but did have speech issues with articulation. She started speech at age 3 and "graduated" fairly quickly.

She began preschool at age 2 and absolutely loved it. She enjoyed the "play" based program and grew socially and emotionally. During the next 2 years she continued in this program and blossomed even more. She loved having books read to her, singing songs, coloring pictures and dancing around. As a former kindergarten and first grade teacher, I knew how much emphasis was being placed on kindergartners knowing their letters so I began to casually introduce the letters of the alphabet to Madison. This was an extremely difficult task for Madison. She may remember one for a minute, then forget it the next. She may remember one for a day, then forget it the next. She may not even be able to tell me what a letter was 2 seconds after I had told her the name of the letter. So, being the teacher that I am, I began to try all of the "fun" things that I used to do with my students. We made letters out of play dough, we wrote letters in whipped cream, I had her trace them on sand paper, lace letters with yarn, write them in sand, make pictures out of them, etc. But no matter what we did, no matter what had worked with most of my students, Madison could not retain letter names...please do not get me wrong, we did not do this daily or even weekly. We would just do this periodically until she reached kindergarten. However, this is when I realized that something just "wasn't right".

In the fall of 2005 she began kindergarten. She struggled to learn her letters. My husband and I conferenced with her teacher who said she needed to work on letter identification, but when asked if she thought there was a problem she assured us everything was fine. Madison changed schools in the middle of kindergarten and started her second semester at a private school. She was still having difficulty with letter id, but the teachers assured us once again that this was nothing to worry about. Meanwhile, at home, we were working diligently to try to get Madison to retain her letters...not an easy task. She stayed at this school through first grade with the same feedback from the teachers. She is a little behind, but it is nothing to worry about. And let me tell you, as a teacher, I was asking, "Do I need to be concerned?" The answer was always "No".

In many cases, well behaved girls fly under the radar when it comes to learning disabilities. They follow directions, they can be quiet, and in Madison's case, she has a strong work ethic, so she is always on task. Well, at the end of first grade I told my husband that I knew there had to be something going on. She was different than any student I had taught and we needed to get her the help she needs. Most private schools do not have testing, so we decided to have Madison privately tested for a learning disability. As it turned out, she has a visual processing disability. This effects many aspects of her life and education.