I get lots of questions about special diets (even though I'm not an expert).  So I thought I would share some of what I have learned online.

Alex has been on his special diet officially for three years.  But for Alex it started well before that.  He would refuse foods and avoid foods that he had decided did not make him feel well.  This started before he was a year old.  I recall hearing when I was a child that disliking a food is an indicator of an allergy.  Adults were talking about it around me.  However, very little credence was given to it at the time.

Alex dislikes and avoids many foods.  He never showed an interest in eating or exploring food.  Food and discomfort are one and the same for him.

Phenol is one category of food that causes many people trouble.  Although it is talked a lot about in the autism and ADD comunities.  The intolerence affects many people in the general population as well.

So what is phenol overload?
Phenols are chemicals found naturally in many of our foods.  The chemical is associated with giving foods the appealing color.  They are a natually occuring chemical that for some can be hard to process once in the body.

What is occuring is that their bodies have difficulty processing the phenols into useful and/or non-harmful substances, known as PST deficiency.  The therapy has been to reduce phenol intake so the body has less to process and prevent build-up of unprocessed phenol in the body. 

Large levels of phenol build-up in the body can lead to behavior problems. Some symptoms can include;

• child waking in the night
• dark circles under the eyes
• laughing at inappropriate times
• self-stimulatory behavior
• ed face/ears
• diarrhea
• hyperactivity
• aggression
• headache
• head banging or other self-injury
• inappropriate laughter
• difficulty falling asleep at night

The typical adult symptom of phenol intolerance is chronic fatigue syndrome, which is the opposite symptom that most children have, altho some children do present as always tired/lethargic, instead of hyper with sleep and other issues.

High Phenol Foods
Banannas, apples, red grapes, artificial coloring, tomatoes, peanuts, oranges, cocoa, red grapes, colored fruits, and milk.

Most of these foods show-up on Alex's allergy panel.  So he does not eat them.  In addition, we have  him take a bath with epsom salt 2 to 3 times a week.

For more information research the Feingold Diet.

Finding local autism conferences and events seems to be difficult at best.  So when I stumbled upon these today I thought I should share them.  I found these on the ASO website.

SAVE THE DATE: October 1st conference entitled “Believe in Possibilities, Navigating Life as an Adult with Autism Spectrum Disorder.” ASO's fall Conference will be for adults with Autism Spectrum Disorder, their parents/caregivers and professionals working with the adult population. View agenda. The conference will be on Friday, October 1st at the Oregon Convention Center, Portland, OR. There will be several break out sessions on various topics and an exhibition hall of agencies and non-profits who supports adults with ASD. Download flyer. Register online.

Oregon Association for Behavior Analysism 1st Annual Conference. October 2nd, 2010, 8:00 a.m. to 6:30 p.m. Shilo Inn Airport, 11707 NE Airport Way, Portland, OR 97220. See brochure for details.

Like a bubble that has been trapped beneath the cool water Alex words race from his mouth in a smooth rolling melody.  "Were going on a trip, were going on a trip, were going on a trip..."

Alex eyes dance playfully with joy as he searches across the bathroom door into the room for my eyes and my smile.  I repeat back to him, "Were going on a trip, were going on a trip, were going on a trip to the?",  a brief silence can be heard.  The sound of water slapping against the side of the bathtub.  Then...

"STORE" Alex says.  It comes like a bright bell sounding in the early morning of a quite town. 

The game continues as I prompt "to get?"

An even longer quite ensues, then quietly like a he's not quite sure of than answer he whispers "StraaaawbeeerriiEEes", with a sly smile he looks up at my eyes and sings, "Were going on a trip, were going on a trip, were going on a trip..."

This is our new nightly game.  It will go on for 30 to 45 minutes.

This is a new skill - Conversational turns (or loops)

Alex is trying to master the next level of conversation and being the perfectionist that he is....Were going on a trip! Every Night! :-)

With an escape artist, slash runner, in the family; we are always on our toes.  However, this weekend Alex seemed to be doing good.

• Friday - he went to the library and then to the park.  While at the park he did very nicely staying in the barked area.
• Saturday - we went to a fenced park but also road bikes in the unfenced parking lot.  Alex stayed near and responded nicely to reminders to stay near.
• Saturday - we went to the McDonald's in town.  Alex can not eat the food.  But he loves to play with the kids on the indoor gym.  He did very well.
• Saturday - we also went to the store.  Alex stayed with me.  He pushed the cart. Never did he give any indication that he want to run at all.
• Sunday - Matt & Alex put bark in the backyard flowerbeds.  Alex helped his daddy get the bark and spread it out.  He never tried to wander away while the gate was opened (daddy was right with him).  He stayed close, listened, engaged and followed directions.

BUT JUST IN CASE WE FORGOT.... "ALEX IS A RUNNER".....
he decided to remind us (or me).  Feeling over confident in Alex's abilities, I took the boys to the water park with Nana (and his cousins).  For the first 30 to 40 minutes Alex did well.  I was on high alert but he was doing well.

Then he started testing his boundaries. 

1. The first time he did not go far.  Just decided to investigate a nearby party.  I redirected him and watched him more closely.
2. The Second time he decided to go for a little run but when I called he stopped and came back.  I again redirected him and told him if he did not stay with us we would have to leave.
3. The Third time he ran and did not stop until he hit the end of the path and I had caught up with him.

I hoisted Alex over my shoulder as he threw himself to the ground and proceeded back to Nana and our things.  I was officially corrected in confidence about Alex's running (wandering, elopement) getting better. 

Alex screamed and cried the whole the way to the car.  Onlookers clearly thinking I am a horrible parent that can not control my child. 

Humiliated, tail between my legs I went home defeated by a six year old.

AAA AH, the joys of parenthood :-)

Persistent gut problems in Alex and an out of balance immune response to allergens led us to recently try Vitamin A Therapy, at the suggestion and supervision, of Alex's doctor.  Because Vitamin A is a fat-soluble vitamin we were very cautious to follow the protocol extremely carefully.

I saw no strange new behaviour during or directly after the therapy.  His attention does seem slightly better but I am not 100% sure.

We will have testing again soon to see if his immune system markers have improved.  This will tell us a lot. 

***Note: Vitamin A Therapy has been found to be beneficial for only a very small subset of children in the autism community.  Alex fit the mould almost identically.  This is not a therapy I would recommend someone try without consulting a doctor which is why I did not go into details about the protocol

For more infomation check out the following link: http://www.drrachelwest.com/Treatments/Vitamin-A-Therapy.aspx

The eveninng sun glows through the bay windows. The sun catches the edge of a curl on Alex's toussled dusty blonde hair and he seems to glow with joy.

Carefully, taking a piece of paper and writing "NO" on one side and "YES" on the other. Each word is underlined boldly. With a sly, very happy smile he say's "Does Alex want computer? Y-E-S YYYees!", he waits for my reply "N-O, No!" Then very carefully and deliberatly he turns back over the piece of paper. His smile bigger than ever he points to each letter "Y-E-S, YYYees!" This exchange of Yes and No goes on for more than 15 minutes. He is happy. I am overjoyed. Alex has learned to negotiate.

The art of negotiation with a limited vocabulary. Alex has known the word No since he was two. However, learning Yes has been a focus for almost two years. It was only with the introduction of reading, writing and spelling that Alex has been able to finally grasp the concept of the difference between yes and no. Now he finds it fun to negotiate. Yes being his new favorite word. He answers Yes to almost any question he is asked. If he really wants a YES as answer he will help assist your head in a YES motion with the word.

Other new negotiation words have been on/off, red/green, stop/go. And colors. Wow! I never knew colors could have so many meanings. Each room in our house is identified by a color. We have a brown room, a blue room, and a red room. He communicates wanting a remote (which is not allowed) by saying "Want blue 2? Yes!" the calm answer of course in "No".

Alex may have a limited ability to communicate with words. But he is demonstrating that he is willing to find his own path toward negotiating his environment and life with those whom impact it.