The Why and What behind Stephen's Diet....

Before I share the 'what' of our diet I want to share two main thoughts that came to me that first year and gave me motivation for the 'why' of our diet.

The first thought was shared with me by another mother in our aspergers/PDD support group. I was discouraged with the lack of help and support from the IU and felt so helpless about Stephen's future. She looked at me in the eye and said, “You are Stephen's biggest advocate. No one else cares about him like you do. It is your job to access services, design his educational program and advocate for what he needs. At this point I realized that it was my responsibility to get help for Stephen— no one else!

There are so many supports available to us in America that sometimes I think we forget to think for ourselves. This was something I remembered and had to apply over and over....when I requested a re-eval for Stephen to get more services, when I told all his teachers that he couldn't have the school snacks, when I discussed vaccinations with several pediatricians, when I asked the head gastro doctor at Hershey to transfer our daughter to another hospital. Not everybody agreed with my/our decision but the end result was our responsibility and they all respected that.

The second major thought was shared with me by a Christian herbal consultant. We were discussing healthy eating and supplements and she told me that we are what we eat. If we eat sugar that is what our body cells crave and thrive on. If we eat healthy food that is the state of our cells also. The 'why' of eating healthy became much more clear to me as I took in all this information. It was my responsibility to help Stephen and he needed the highest quality nutrients to support his brain growth and development......now WHERE to start?

At this point we had all ready removed all the 'bad' stuff from our cupboards but it was overwhelming to think of planning three healthy meals every day, on a budget, for a very picky eater, a toddler and a growing baby! Back to the drawing board we went :-) With the help of my friend, again :-), I wrote out a weekly menu of what Stephen typically ate. Then I went hunting in the stores for healthy replacements. The first principle I learned....start gradual, start with favorite foods and pick replacement foods that are appealing and taste good! The goal is to train your body to crave less sugar, less white flour and more 'good stuff.' In the beginning I didn't worry about variety or balance as much as quality. Breakfast was the easiest meal for us to start. Here is the before and after picture of his menu:

Before: Lucky charms, pop-tarts, cereal, instant oatmeal, doughnuts, pancakes(syrup with HFCS), sausage, eggs

After: Jones(all-natural sausage), organic instant oatmeal, whole grain pancakes with flax seed added, maple syrup or Log Cabin(no HFCS), scrambled eggs, french toast with whole grain bread.

We did the same thing with his lunch and supper menu items...keeping plenty of healthy stuff on hand—within less than a week we noticed a difference! As he stopped craving all the pure white sugar and white flour he started to clean his plate and eat more meats and more balanced meals!

I found several places including Amelia's, Sharp Shopper and Wegman's where I could get 'safe' food at a discount and learned what to keep on hand to make meals doable and healthy.

At this point he began speech therapy at the IU(September 09) and also started receiving Behavior therapy support in the home once a week(October 09). His stimming, chewing and other abnormal behavior lessened with the healthy diet but he still had a hard time relating to other people...especially his sisters! I found myself making excuses for him or answering for him when an adult asked him a question that he rarely knew how to answer....I desperately wanted him to be 'normal'...to be like all the other little boys that I saw playing together and interacting with friends...Life continued to be a whirlwind of therapy, research, shopping and reading as we tried to make sense of this diagnosis and anticipate what the future might hold.

The information we had learned so far was the key to unlocking Stephen's world...the door wasn't open yet but the key was in the lock and we were primed to go! Keep reading future blogs as I share more of what we learned!

The Journey Begins

July 7th, 2009: Dave and I met with the psychological review team at Keystone and they went over Stephen's needs and official diagnosis: Pervasive Developmental Disorder. I remember standing over his bed that week watching him sleep. He was curled up in a ball sucking on a blanket. He looked more like a 12month old than a 3yr old and it broke my heart. I wondered: would I ever really know my son?

It was around this time that I began to research and learn about 'healthy eating' and diet changes. I learned that most High Fructose Corn Syrup has some mercury in it. I learned that some forms of Red dye are made from the shells of South American Bugs. I learned that most dyes have been proven to cause allergic reactions, hives or behavior problems in children on the spectrum or ADHD. I learned that most autistic children have an overload of metal in their system and the above foods often triggered behavior because of the child's inability to deal with the food. At this point we were desperate to find answers, willing to try anything that might help Stephen. A friend helped me clean out our cupboards....we dumped Kraft Macaroni and cheese(yellow dye), Pillsbury biscuits(Red 40), Chocolate pudding (Red 40), Hot dogs(nitrates and nitrites), Hershey's syrup(HFCS) Jiffy PB(hydrogenated oils) Welchs jelly(dye), Heinz Ketchup(red 40 and/or HFCS)...the list goes on and on. It was very overwhelming to see the pile of discarded food and the empty cupboards with not much in it!

I know it sounds impossible and you may wonder what we eat :-) but we have found many ways of eating healthy that are doable and even economic and fun! Once you learn what is safe and how to eat healthy it is actually easier to plan a menu. More on that later.....

It was the beginning of a rough summer but God provided in so many ways. One of my cousins traveled over an hour to work with Stephen several days a week. Another teacher also drove a long distance to coach her and work with Stephen. A educational consultant donated almost $600 worth of teaching materials and language cards so we had material for his language program. A friend from church volunteered many hours that summer working with Stephen, cooking our suppers, babysitting and overall helping me maintain my sanity :-) Another friend helped me fill my cupboards with 'safe' foods to replace all the ones we got rid of. One thing I have always been grateful for is the overwhelming support and acceptance we felt as a family before and after his diagnosis. It was this support and God's grace that carried us through the next two years.

That fall I fought with the IU to increase his hours and finally compromised on speech therapy twice a week and one language group class. We began to try different supplements to increase his brain activity, cognition and language. It was that fall that we began to see improvements in his language. I think it was a combination of the intense summer program, weekly speech therapy and the diet changes and supplements we added. He began to label things but at this point we had all ready lost over a year of his developmental life so his frustrations and behaviors continued to be challenging as he struggled to express his needs and cope with two younger sisters.

In the next chapter I am going to talk about specific medical issues that we found related to Stephen's Autism, Ruth's Pancreatitis and Asthma and Allergies for both of them. I am going to talk about the path we went down and the dramatic changes we saw in Stephen!

Searching for Answers

It was January 2009. I was 8months pregnant with our third child and Stephen had made little progress in 8months of Early Intervention Therapy. I questioned the therapist again....couldn't it be Autism? Why isn't he learning? Why does he line up his cars instead of playing with other toys. Why does he chew his blanket? Why does he run around and bounce off of things? She repeatedly brushed me off and reassured me that it could NOT be Autism because he gave such good eye contact. Given he did not initiate contact with anybody, never ran up to me and said I love you or gave me a hug. I wanted to believe her but a deep sense of unease began to build inside of me.

March 2009...in conversation with a friend about another boy with a delay I realized it was possible to have autistic tendencies and not be full-blown autistic. I went online and took a questionnaire and Stephen scored very high for Pervasive Developmental Disorder. I showed it to the therapist but she brushed me off again and pointed out the weakness of online tools. Stephen's diet continued to be limited and his vocabulary was less than 13 words. He didn't say hi or ask for anything unprompted. He did not understand questions, especially not yes or no. His main words were juice, cookie, truck and car.

At this point Dave and I felt like we were going crazy. We were desperate to find answers, to point out a reason for his unusual behavior and lack of communication besides poor parenting skills. From what I have read this is very common with parents of high-functioning autism children. Because they don't 'appear' to have a problem people often offer parenting advice and think the child is just out of control.

With my experience as a Special Education teacher I saw signs that I couldn't ignore....random fears and sudden cries or temper outbursts for no reason...I saw the autistic tendencies that I had overlooked for so long. I became desperate to find a professional who would agree with me so that I could get him help.

May 2009. We had Stephen's hearing tested and they found no problem. I left that appointment with a sick feeling in my stomach. If it wasn't his hearing there was something definitely wrong psychologically but how I could find someone to help me? Stephen went to the IU for his Evaluation and they assured me he could not have Autism...he was way too 'interactive' and high functioning. They brushed me off again. I was furious when I got a phone call saying he qualified for one 3hr class a week and no speech therapy!!! At this point his vocabulary had not improved and he was barely at a 12month level.

I learned that parents are entitled to request an Independent Evaluation at any time if they do not agree with the school district. Parents have so much more authority and rights then the school district tells them. I called Keystone and scheduled an eval for Stephen in June. Meanwhile I began to pour over websites and books searching for answers, searching for hope.

It was hard to connect with Stephen...he didn't have much of an emotional affect and seemed happier playing by himself. With a 2yr old with asthma problems and a nursing infant it was tough to give him attention when he didn't seem to care either way. I struggled with guilt and exhaustion constantly but pushed down all the feelings and would not allow myself to believe he was autistic until I found a way to 'fix' him. His behavior worsened and was unpredictable around other people. I began to fear for the girls safety and could not leave them alone for more than 15seconds. My emotions began a downward spiral as life seemed impossible and hopeless. Instead of trusting God and waiting on His timing I begged Him for help, for a solution. Now looking back I can see God's provision and love in every step—it was meant to be a journey of growth and faith, not desperation and discouragement.

Stephen's Story

He would play for hours by himself, lining up cars or watching TV. He spoke little and used gestures and sounds to get what he wanted. His diet changed from eating anything to a very limited carbs and sugar diet. He became afraid of new foods, gagging or crying in terror when we put them on his plate. When his sister arrived his behavior erupted and he threw toys in frustration or attacked her when she got too close. He would run in circles, make loud noises or chew on items when he was worked up.

The innocent habits I brushed off early on became my worst nightmare in July of 2009 when this boy, our son, Stephen was diagnosed with PDD or high-functioning autism. The diagnosis was no surprise to us—just a confirmation of what we had feared for so long. It was the starting point of a journey, a journey of hope, despair, anguish and frustration as we tried to find an answer, a way to unlock the window of Stephen's world and find our little boy inside.

How did we get from there to here?

It is a story I want to tell, a story I need to tell. How a young mother found answers, found hope and ultimately found her little boy.

Today I sat in the IU office and heard Stephen's teacher exclaim over his progress. She pointed out his levels and progress report with NO sign of a language, articulation or cognitive delay. She told me that he was helping the speech teacher lead his play group class! Modeling language for the students and prompting them when they didn't know the answer. She reminded me of the little boy that entered her office not two years ago with a sound repertoire of 6 sounds and 13words. A little boy who couldn't answer questions and was locked inside his own world.

This amazing account of his progress has inspired me to do something I have wanted to do for so long: tell Stephen's story. Piece by piece as I remember the dietary changes, the supplements, the search for therapists and finally finding a doctor who believed me and was able to help our son.

I hope that this story touches you, that the information I share may help someone else's son or daughter struggling with a disability or challenge. But ultimately, I hope that this story gives glory to God and praise for His touch on Stephen's life.