Changes in Attitudes, Changes in Latitudes

By Ronald E

I am standing in the kitchen doorway watching him eat.  Sitting at the table, he is eating like a normal six-year-old boy, and I think of the miracle I am seeing.  His feet are tucked up underneath him as he mows through another bowl of cereal, eyes constantly scanning and reading the three things in front of him, the back of the cereal box, the back of the soy milk carton and a advertisement insert from one of his toys. I don’t know what I am marveling at the most, the fact that he can sit at a table by himself, eat the meal, or read all three things at once.

You must be thinking “Why is this a miracle?” He is a normal six-year-old boy.  Taller and a bit broader than most, but still a normal six-year old boy.

But he isn’t.  He is so far from normal.   This behavior was not always the case.  Four years ago , two very distraught parents took a extremely overactive boy with very low muscle tone, no language skills, and a very, very limited diet to a number of doctors to find out what was wrong with him.

You all know this drill. Pediatrician doesn’t seem to think there is a problem.  When we took him to the Early Intervention Specialists and then to the Neural Specialist at the Medical College of Virginia several terms were thrown out, Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS), Aspergers’ Syndrome and the A word… Autism.
 

At that time, getting him to sit still was a major issue. Over the next two years, we watched his diet shrink to milk, cereal and pop-tarts.  Jonathan would fluctuate between very high energy and very low energy.  Translation: Bouncing off the walls and everything else, fits, screaming, refusing to listen, running away, etc.  I’m very serious when I say that my wife was paranoid about taking him anywhere.  He was everywhere and into everything. Emotionally, my wife would crumble when people would stare and make comments about not being able to control a child.  It was a very difficult time for us.  At that point, medication for him sounded like the answer.

Nights were the worst.  Jonathan wouldn’t sleep four hours and then he would get up and wander the house getting in to things.  We had to turn the doorknob around on his room to keep him safe.   When he would sleep he had to be rolled up in his blankets like a burrito.   And then there was his self-stimulating behavior of head banging, to relax himself to go to sleep.

Eventually, we took him to the feeding clinic at Children’s Hospital in Richmond, Virginia.  His first visit was with me to help handle him.  The second visit, we were basically told not to bring him back until we could get a handle on the behavioral issues because there was no doing anything with him.  The nurse told us to go a wonderful Doctor in town working miracles with these children, Dr. Mary Megson.

I couldn’t believe it was four to six months to get an appointment.   But, it was worth it!

Dr. Megson sat with us and looked Jonathan over.  After about 20 to 30 min of questions about our family history and listening to us, she pulled out several books and talked about what she believed the problems were. He needed to have the liquid Vitamin A because he was showing many of the signs of Vitamin A deficiency.  She ordered a huge blood work-up. He was a classic case of the gluten and casein problems.

When we went back to see her with the blood work-up and she was right.  The antigens in his blood for casein and gluten were extremely high, over ten times what they should be.  These improperly broken down proteins were making an opiate like substance.  This chemical overstimulates the neural cells.  These cells surround the heart, the lungs, the adrenal glands, every organ in the body, as well as in the center of the brain.  The opiate overstimulates the cells, and they form a wall.

The auditory processing side of your brain is on the opposite side as hearing.  The words come in. They mean something, but the brain can’t reach through the wall and bring back the image of a chair.  Same thing happens with short term and long term memory.  They are on opposite sides of the wall.

It has been well over two years since we started detoxifying him.  This article will review some of the things we did, foods we eliminated, foods we added, some results from the journal I kept from the first 3 months and how we live today.  I will include brands, where we get them and costs.  These foods were not cheap, but quite frankly, for the results I’ve seen, I would have paid a lot more.

Gluten, Casein and Cod Liver Oil

Sun Tzu said the first rule of war is to know your enemy.   We needed to find out what gluten and casein are in and what could he eat.

What is gluten?  Gluten is the glue stick protein that you find in wheat, rye, barley, oats and malt.  It is what makes bread dough elastic and rise to be light and fluffy.  It is ideal for pastas. Any flour or starch extract from any of these sources contains gluten. Gluten is everywhere it seems.  It is in a lot of the foods we eat and do not even think about.  Many times, wheat flour is added to our gravies, soups, and other liquids to thicken them up as an emulsifier.

Casein is an insoluble protein found in cow's milk and all milk products: milk, ice cream, butter and cheese.

Vitamin A is found in two different forms, solid and liquid.  Solid Vitamin A is different in molecular structure that liquid.  Your multi-vitamin and your cereal contain solid Vitamin A.  Liquid vitamin A is found in fish oils, like Cod Liver Oil.  I can feel you cringe reading that.  I did, too.

Being gluten free, casein free and a good source of Vitamin A are the most important things you can do for your child with Pervasive Developmental Disorder.  At first it seems like an impossible task.  When you read food labels for everything in the grocery store you will find wheat flour, milk products, sodium caseinate, emulsifiers, etc on the labels.  All of these food products must be removed from the home.

The following excepts from a journal I kept will document some of the changes in my son.

The Journal Of Ronald E

17 November 1999

The purpose of this journal is to provide a written documentation to my son’s progress and to record my thoughts and feelings.

My son, Ronald Jonathan “Jonathan” E has been diagnosed with Pervasive Developmental Disorder ‘PDD”.  Over the last two years, labels to describe his difficulties have ranged from autistic to Asperger’s Syndrome.  On the 11^th of November of  this year, my wife and I took Jonathan to see Dr. Mary Megson.  After a physical exam and looking at our family histories, Dr. Megson believes Jonathan’ problems result from improperly digested Vitamin A.

Vitamin A exists in two forms, a solid, which is in our multi-vitamins and our cereals and a liquid form, as found in Cod Liver Oil (CLO).  Both children where recommended 2 teaspoons of CLO a day.

One of the things this journal is aimed at is to chronicle my observations.  The other objective is to give me a chance to express my feelings.  Let me qualify anything I write here by saying that I love my wife immensely; however, she does drive me nuts!

This journal is dedicated to my children, Katy and R. Jonathan with all my love.

 {Author’s Note: At this time Jonathan is four years and three months and Katy is six years and five months.}

I gave both Jonathan and Katy their Cod liver oil in Sprite today.  The white {Tupperware} cups had lids to them , and they drank it down well.  The children played while I did all the housework,  Sewed Katrina’s Brownie vest. 2 ½ hours to put on those patches.  Karol will try Patch-Attach for the last two.

Kids got their CLO in apple juice.  Slipped Karol some in her morning tea.  She was not amused.  When Karol went grocery shopping , Jonathan asked ‘Where is my Mommy?”  I am seeing an increase in his use of articles and expressing concepts.  He told Karol a full sentence about his sister , but for the life of me I don’t know what he was talking about.

Jonathan took his Cod Liver oil from a spoon today.  Might be the optimum method. 

Karol tried to give Jonathan and Katy their Cod Liver Oil (cod liver oil) in Sprite. Neither took it.  The second attempt in apple juice worked well. 

Finally caught up!  Well, I gave both kids their CLO this morning at six forty-five in a dose cup.  Katy spit hers out, and Jonathan asked for a water chaser.  I was mad at Katy. She spit hers all over the kitty comforter.  I shouldn’t have yelled, but she made me mad.  Her second attempt was not much better.  She spit most of it back in the water glass.  Guess it will be in apple juice or orange juice. 

Jonathan’ blood work came back.  He is not allowed to have any wheat, spelt, oats, barley, rye or pastas.  We must wean him slowly off.  No Pop-tarts.  Rice cakes, Van’s Toaster Waffles.  I will see the actual report tomorrow.  I picked up a set of 1-2-3 Skates for Jonathan.  I only paid eighty-three cents for them , so they were a steal.  Now, both kids can skate in the garage. 

Last night I was greeted when I got home with a request for a teepee for Katry’s class.  Karol forgot to tell me about the fact she had volunteered me.  Well three saplings and ten feet of rope later, Katrina and I built a teepee.  Karol brought out some old sheets to cover it with.  I laughed and said “Me hunt white buffalo.” 

We had a late dinner, but we had some wonderful family time in the cool Virginia night air.  Jonathan kept chasing the dog and playing with the stick.  I put the Teepee in Karol’s car for her to take to school. 

On Friday when I saw Mrs. Marshal this afternoon, she thanked me and put me to work helping in the classroom.  Katy was tickled I got out of work early and was able to come to school. {No small thing when work is 45 min away.} 

Jonathan is making small steps.  We are continuing the cod liver oil and cutting down the wheat products.  Jonathan talked with Karol.  He was playing with his boat in the tub.  Karol asked him what he was doing.  He said, “Playing with my boat.”  Karol said “Yeah.”  And he responded “Yeah.”  This is the first time I have heard or seen him make a response indicating that he was reaffirming her understanding of his answer. 

I was surprised to see he did not miss Katy last night when she went to the slumber party at Tiffany’s. (Why do they call them slumber parties when they don’t sleep?)  Katy was the last one to sleep at 2 am and the first one up at six.  She was getting crabby around eleven, so I sent her to bed. 

Jonathan has started an annoying habit of taking the “Blue’s Clues” Handy-Dandy Notebook and swinging it by its lanyard to the crayon.  Karol says it is part of the autistic stimulation. 

Jonathan discovered James Bond last night while we were watching “Goldeneye.”  He was even saying “Bunp, James Bunp.” 

When Katy came home , he said something about her being back, but he did not acknowledge she was gone, only when she returned. 

Of course, they have been in conflict over toys lately. 

Oh, I tried to get Katy to help teach Jonathan to clean his room.  Sifu once said “To learn something , you should try to teach it to someone else.”  The words I think came directly from Master Chan.  Well , first attempt failed, but it will not be the last.  The sky is so clear tonight, and the moon so full.  Its pale light shines illuminating the world, showing us the beauty in a soft romantic light.  Well, off to sleep. 

Well , I didn’t get too much time with the kids today.  When I got home they were both whiny, Katy much more than Jonathan.  So , at ten after seven , they both got stories and sent to bed.  I made Katy sound out the words in “One Fish, Two Fish.”  She needs the work in the mornings , and when she gets home from school. 

I did put together a list of foods for Jonathan.  I’ll print it out tomorrow. 

Well, a whole week has passed. I feel awful for not making daily entries.  I will try harder, and I am also going to try to write on hour a night. 

Tuesday was very busy.  Karol decided we would scrub the downstairs carpets with a friend's Thermax.  What a pisser. Jonathan went to his room and shut the door.  We picked up and straightened in preparation for the family room. 

On Wednesday, Karol called me at work.  She had overslept.  Jonathan woke her and said “Ta, Da!” holding out his arms.  It took her a moment to realize Jonathan had dressed himself!  Shirt, socks, pants and underwear.  Katy said she gave him no help at all.  I was amazed.  So was Karol. 

I took off at noon for Dulles airport to meet my sister and nephew Thomas.  I hit the McDonald‘s by work and got two Happy Meals and Lego sets for Jonathan. I got my sister and my nephew from Dulles and brought them home.   Mom and Dad arrived late, but we let the kids stay up to see their grandparents. 

Thursday, Happy Thanksgiving!

Jonathan, Tommy and Katy played very well together.  Jonathan and Tommy (2 ½ years old) had several squabbles over toys and a squealfest.  Tommy is not old enough to interactive play with Jonathan ,but they did do some parallel play.  Several times during the day we heard shouts of “No that’s mine!” from Jonathan and “Mio! Mio!”  from Tommy. 

Katy has had a blast with Tommy so far.  She must see him as a living doll.  She had enjoyed playing and sitting with him. 

On Saturday, Jonathan and Tommy locked horns over the soccer ball.  Tommy wailed on Jonathan.  Jonathan threw him down.  Then, Tommy bit him.  All of this is second hand, so I don’t know.  What I do know is that Katrina cried until she got Mom and Karol to agree to decorate the house.  When we got home,  Dad and I spent the rest of the daylight running Christmas lights. 

Sunday, I was early to take Lisa and Tommy back to the airport.  Jonathan saw his second James bond movie, “Diamonds are Forever” 

Finally to Monday.   Jonathan crawled in bed with Karol, and they over slept.  What is more, he flooded the bed… MY bed!

The kids have had more fun playing with the box from the steam cleaner than any two toys combined.  Jonathan took one square box with a rectangular hole through it, placed it on his head and said, “I am a space ranger!” 

Katy was up several times through the night with nightmares.  At one point, she was screaming hysterically about aliens.  She would not stop screaming until I found her Dreamcatcher and put it back in the window. 

I read a Superman Comic book to Jonathan, and he loved it. 

Discovered what cause Katy’s nightmares.   She drew a picture, at my request, of the alien.  It was a Synthesizer Box.  I recognized it from the TV show Snoops.  The kidnapper talked in the box to disguise his voice, and the voice was scary.  Tonight, Jonathan got a Batman and Robin comic book.  He told me “Stay here, my father.” 

Katy tried sleeping in Jonathan’ room, but she needs a light, and he needs it dark.  So, she is sleeping in her room with the light on.  I figure two or three days, and she’ll be fine. 

My apologies for such a long time between entries, but it wasn’t until Saturday morning that I got rid of my headache. 

Friday, I volunteered in Jonathan’ classroom.  We had fun playing with Miss Betsy and the other children.  Jonathan was riding the trikes around, zipping between kids and around objects like an Indy car racer.  We went to the library and got a book.  Jonathan was more interested in squirming around in my lap than the story.  Nicole is very aggressive in the class and is probably where Jonathan was a year ago.  Jonathan sat on a spot after Miss Betsy told him to sit down.  He got back up, and when Miss Betsy said, “Sit," he announced to the whole library,  “It's pee-pee!” 

The children had pizza at lunch   Jonathan didn’t seem envious.  Karry came and took him off to speech therapy.  When they came back , we talked about using the “Today I” pages to make a book.  I tried to lie down for a couple of hours to get rid of my headache.  Nope, still have it.  Katy had her program to get her cheerleading trophy.  She is so proud of it.  She is still bawling about aliens.  Jonathan and I watched Bond and had fun. 

On Saturday , Karol and Katy spent most of the day touring the plantation house in the area.  Jonathan and I lifted weights in the garage.  I over heard (one word) Jonathan talking as he played, and his vocabulary is increasing. 

Yesterday, Jonathan talked to his uncle Dan (Karol’s sister’s husband).  Jonathan actually had a conversation with me while I was on the phone with Dan.  Tonight, Jonathan and I watched another Bond flick. 

Finally today, Sunday.  Jonathan said a seven word sentence to Karol. Unbelievable. It was this evening before he put himself to bed at nine thirty. ( He had a two hour nap at three thirty.) 

Jonathan was wonderful during the Children’s Moments at church.  A little wild after that.  That’s about it.  Eleven twenty-five and five thirty comes awful early.  Night. 

Well another week shot to Hell. I have been meaning to write everyday, but, well excuses don’t pay the mortgage.  Thursday I took my alternate work schedule day so Karol could be in to her meeting by eight am.  I promised Betsy Wright, Jonathan’s teacher, that I would volunteer Friday in her classroom.  Since I had to work Friday I went in on Thursday.  Good thing too.  Betsy had to take her son to the doctor, so it was a substitute Terri and myself with the class.  Since Jonathan had half a bowl of cereal at home he drained his juice box at lunch and didn’t eat much else.  He was so occupied while the kids were sitting down.  Lynse was not sitting in the right seat.  He kept telling me “ Lynse not in her seat”. 

I was so tickled at the way he expressed himself.  When it came time to chose jobs Jonathan wanted to be “Alnder Helper.’   Took me a while to figure out that was Calendar Helper.  Well he could not sit still and be quite long enough, so some one else got to pick it.  Miss Terri choose the quite children that were in their chairs, a nearly impossible task for an excited Jonathan.  When the “Alnder helper’ was chosen he as like “Aaaaaaaaa.”  When it was Jonathan’s turn he chose to be the Weather helper or “Weader Hper” as he says.  The Weather helper gets asked what the weather is like today.  They then chose between the pictures with words of Cold, Cool and Hot, then they choose between, sunny, cloudy, foggy snow, rain and sleet. 

When the picture helper, Morgan, gave Jonathan his picture, he ran over to “House Keeping” and slapped his picture there at that activity.  He did this last week too when I was in the classroom. 

I got to be the “Art helper.” The children are working on Christmas trees pictures.  They painted them green the other day and were using glue and sequences to make ornaments.  I had to pry Jonathan away from the computer to get him to do his art project.  Every time the monkey would fall on the computer he would say “Oh poor monkey” and then giggle wildly.  Nicole was impossible in art and Lynse moved with a slow perfection.  Around ten thirty Miss Terri got a call that her daughter was sick at the high school.  Well Terri couldn’t leave the classroom without Betsy there.  Finally the sub and I convinced her we would be okay.  Garrison, a strongly autistic child, was at therapy, Jacob, the boy with Down’s was playing very well, Nicole was also doing well.  So Terri left.  The sub kept an eye on Jacob and I on Nicole. The kids were great.  When Terri returned she told me her daughter had the flu and felt worse when she laid down.  Her fever was over a hundred.  I offered to take Terri and Katie (Terri’s daughter) home since all she had was the bus to driver her home in. 

Well lunch came and was a challenge.  The cook put all the Jell-O for both classes together, so I had to try to dish out five Jell-Os from the blob with only two baby spoons.  It was not easy.  The lunch that day consisted of cheese sticks, salsa, corn and Jell-O.  Jonathan had ½ a cheese sandwich, which he didn’t eat, a slice of his pizza, he didn’t eat, a slice of cheese, he ate and two cookies (Karol’s chocolate Chip Gluten Free Cookies) 

{By the way, I made Gluten Free Cookies Monday Night.  Not too bad tasting} 

After lunch Jonathan was on of the first in line to go out and play on the playground.  Jonathan enjoyed running and sliding down the slide with Jonathan and Lynse.  Since we were going to take Terri and Katie home, Jonathan and I continued to play after the other children started to leave.  We picked up the hockey/golf sticks that have really big foam pads.  We used a big ball and I took the stick and hit the ball to Jonathan.  The he hit it back to me.  We played for about five minutes.  Jonathan is kicking much better, he kicked with both left and right feet. 

Well after we finished we took Terri over to the High School to get Katie. Jonathan had to adjust.  He wanted to sit up front with me.  Well after we took Katie home and Terri back to school it was two and I hadn’t had lunch yet. 

The day before I had rented the “Iron Giant”.  Jonathan kept asking for Hogarth, Hogarth.  It is very good movie, the ending makes me cry.  Specially when you hear Hogarth say, “you are what you chose to be” And the robot says “superman” as he destroyed the missile.  Well I brought the tape player down from upstairs and taped it. 

I woke Karol at 4:30 pack the kids up and we traipse off to Cumberland to find a Christmas tree before dark.   We were going to Bogg’s Tree Farm and had NO idea where it was on Cartersville Road.  After a couple of wrong turns and some directions we found it.  We got to the farm as the sun was setting and started looking for a tree.  We left at seven and headed home. 

As we drove home the kids were very vocal about being hungry.  We dropped off the tree at home and headed to the grocery store.  As we were leaving the grocery store Jonathan looked down the plaza and saw the Subway sign.   Taking a hold of my hand he pulled me towards Subway yelling, “I hungry, I hungry!”  It was difficult to make him understand we had to meet Mommy and his sister at Taco Bell. 

When we all finally got to Taco Bell I ordered Jonathan a Mexican Pizza thinking it was on a corn tortilla.  While we were waiting for our food I had to pry Jonathan away from the ice cream chest.  I told him maybe after dinner.  When the food came we sat down and realized the Mexican Pizza was on a flour tortilla.  I went back to the counter and got him some of the corn chips, about the only thing in the restaurant he can eat! 

After dinner Jonathan picked out and orange icee.  After I paid for his and his sisters he came back with some candy.  I told him no he had gotten ice cream.  He started screaming “I want candy!  I want candy!”  Half an hour later he stopped, after we got home.   It was very trying.  On the way home Karol said he wanted candy and she said it was okay.  

When we finally got him calmed down he ate his icee and loved it.  Karol and I went to bed very stressed out. 

On Friday the tenth, I worked.  When I got home Jonathan had put himself to bed so we didn’t get to trim the tree.  I put what lights we had and sent Karol out to get more lights. 

On Saturday when I got up, the kids were dying to trim the tree.  Jonathan had plugged in both trees.  We got the ornaments out and started sorting out the heavy ones and the ones that light up.  Well we spent two hours hanging ornaments and having fun.  At ten I sent the kids up stairs to wake Karol.  She finally came down and hung the final couple of ornaments and the icicles.  Jonathan discovered the “Our First Christmas Together” ornaments.   The ornament changes from the silhouette of a couple kissing to a light outside.  When the outside light came on he would say, “Door closed.”  And when the inside light came on, he would say “Door open and they kissing!’ 

If that wasn’t enough Jonathan found the button on the Star Trek ornament that when you push the button it says “Shuttle Craft to Enterprise..”  I had two on the tree and he would alternate pushing the buttons. 

Jonathan blew Karol and I away on Sunday.   While we were playing in the kitchen he said, “Time to use the bathroom.  Time to use the bathroom.  Goodbye,” as he ran off to the bathroom. 

Later Jonathan was sitting in the kitchen and was saying “Is that Jonathan or Tommy? Is that Jonathan or Tommy?”  I thought he was referring to his reflection or a picture.  I looked around the room and didn’t see either.  Then Jonathan pointed to Tommy’s sippy cup and said “That’s Tommy’s cup” 

Dinner tonight was Lemon Chicken.  I coated the chicken with the sweet rice flour after dipping it in egg.  The coating stuck better than when I just roll it in the flour.  The sauce was a powder mix I got at the Oriental Grocery Store.  Pretty good. 

Jonathan walked into class (Karol had taken him in since everyone missed the bus this morning) and said to the room “Good Mornings Everyone. I’m Here!”  Karol and the teachers where stunned. 

Happy Birthday Mom.  When I got home, Jonathan had already put himself to bed at five.  Karol and I discussed whether to put Jonathan into Junior Kindergarten or Kindergarten.  New school, New room, New teacher.  It will be a difficult transition for him. 

Jonathan woke up at eight when I put his sister to bed.  He played with his Legos and wanted some cereal. 

Jonathan was asleep again when I got home.   Jonathan got up later.  He had a black eye and I asked him where he got it.  He pointed to the shiner and said “PE.”  We took Karol’s car to the garage and when we got home I gave Jonathan the keys.  He unlocked the door and let everyone into the house. 

Yesterday I got home from work and Karol and Jonathan had baked cookies.  GF sugar cookies too boot. Jonathan helped roll them out and then cut them with a cookie cutters.  He got them off the cookie sheet and put sprinkles on them.  He insisted I had one when I walked in the door.  Her saved a gingerbread man shaped one for his sister. 

He is starting conversations to find out information.  I have noticed some echolalic speech from “The Iron Giant”  We will see if it is still as fresh in a couple of weeks. 

Jonathan and I had a contest of wills.  I told him it was time for bed, get in the bed.  He replied “ No Daddy, sleepy floor.”  “no,” I said, “You sleepy bed.”  With that I picked him up off the floor and put him in the bed.  He slid out of bed and said, “No, I sleepy floor.”    Again I put him back and again he slid out. 

With a stroke of genius I took his blankie and tucked them back in bed saying, “Blankie is sleepy bed.  You sleepy where ever.”   He said, “I sleepy bed.” 

On Friday morning I made Katrina cinnamon and sugar toast for breakfast.  Jonathan wanted some so I cinnamon and sugared his bread. 

I was just informed that on Wednesday at school Jonathan tried turkey for the first time and four bites of mashed potatoes.  Jonathan’ new phrase is “I hungry in my tummy” 

Jonathan wrote his name today.  It looked more like J o n t h o n but it was very good.  He was grasping the marker in his left hand, palm facing him.  There is no fine motor control, specially like this; however, you can see his frustration when his h was not what he wanted. 

Jonathan has been playing a new kind of game with me.  I’ll ask him if he wants some cereal and he says. “No cereal” and shakes his head no.  Then I’ll ask if he is sure and he’ll reply, “Okay, I have cereal.”  It is cute to watch as he turns his head to the sky and thinks.  His verbal skills are increasing the more he speaks.  

Jonathan has been taking his CLO from a does cup and holding it in his mouth.  He washes it down with a water chaser.  Yuck.  For dinner he had three servings of potatoes.  He even asked “more potatoes Daddy.” 

I was greeted this morning by Jonathan angelic face telling me “It’s snowing.” 

Well to say the children were excited would be to make an understatement.  Katy was so anxious for Santa Claus to come.  I read “General Lees and Santa Claus, Grandma read “Visit from St. Nick and my wife read “The Polar Express.”  My daughter fell asleep ½ through the Polar Express.  Jonathan was still going.  He stayed up to watch the “Grinch: and “Finstone Christmas Carol” 

It started snowing earlier today and Jonathan was so excited.  He was yelling “It’s ‘Nowing, It’s ’Nowing.”  I tool both kids out and he put snow in his sister’s face.  When she did it back he ran to his mother crying.  Karol said “look don’t starts something then run to me!”   

Well all of the presents are wrapped and under the tree.  Time to sleep. 

The last three days have been full, to say the least.  On Christmas I started with my voice being gravelly.  By Sunday it was gone completely. 

On Christmas morning I was awoken at six thirty to the sounds of Jonathan yelling “I got a bike! I got a bike.”   The kids came strumming into my room and leaped into the bed.  Katrina was bubbling.  Santa had left her a chocolate Santa on her bed. (And one on Jonathan’ too.) 

My wife and I got dressed and joined her parents and the kids around the Christmas tree.    We spent the day unwrapping packages and playing.  I put a light in my son’s closet. 

On Sunday morning Jonathan woke me up asking “Where did Grandpa go?  They’re gone!”  Katy was crying that they had left.   My wife’s parents always leave very early in the morning before everyone is up.  My voice was completely gone.  We sat around and watched “A Simple Twist of Fate” 

Today My wife went to work.  She came home at one with a head ache and had lunch.  She and Jonathan went down for a nap.  

My wife and daughter had lunch with friends at Chuckie Cheese.   Jonathan kept me company at home.  We played Legos and watched TV. 

My voice is getting better, but the throat is still sore.  I have not been sleeping well because of my awful cough.  I got up with Jonathan at five thirty.  He said, “ I hungry.”  I tried to pout him back to bed with out feeding him but he started crying.  So I got him a little soy milk and a little cereal. 

Today I finished putting the florescent light in Jonathan closet.  When I was done he said, “WOW.  Nice light.  Thank you Daddy.”    You could have knocked me over with a feather.  I was flabbergasted. 

2 Jan ’00 Sunday

I am finally better and Karol has it.   One of the cats was looking out side at the snow.  My wife saw her and asked if she needed to go out.  Jonathan quickly chimed in “No, she’s scared.”  This drew a strange look from my wife.  But Jonathan and I could see the dog outside the door.  Karol asked “Who’s scared?”  Jonathan said that the cat was.  Even more puzzled Karol ask, “What is she scared of?”  Then he told her “The dog.” 

Conversations like this are becoming more and more common.  We can see his brain working and we are beginning to hear the words in his head.  

3 Jan ’00 Monday

I went to the dentist today.  On the way back I stopped at the Oriental Grocery Store and got three bags of sweet rice flour, three bags of white rice flour and a large box of potato starch from Thailand.  It was either the Siamese potato starch or a can from Africa.  I think I trust the health codes for making the stuff from Thailand more that I do Africa.  Maybe it is just me.

When I got home I was informed that Jonathan was wound up and need wrestled with.  After wrestling around a while, I got Jonathan wrapped up and pinned him to the floor.  He looked up with that cherub face, smiled and punched me right in the nose.   It was quick and strong. 

5 Jan ’00 Wednesday

Karol gave Jonathan a large does of CLO before we took him to her doctor’s appointment.   Karol horned in on my doctors appointment, which meant both kids had to come too.  The doctor put me on five days of antibiotic and Karol two weeks.   Jonathan was very well behaved.  I mentioned the progress we’ve been making with him.  The doctor said she remembered the last time Karol brought him with her he was, “swinging off the chandeliers.”  She was very happy with his progress.

When we got home, we watched a little TV and Jonathan put himself to bed.  I went up to tease him about going to bed and he said “Get out of here, I’m sleeping.” 

11 Jan ’00 Tuesday

Last night when I got home from work I heard Jonathan in the tub upstairs. I called out “Where is my frog?”  He answered “Ribit, ribit.”

Jonathan was so excited.  Karol made GF chocolate chip cookies.  They taste pretty good.  Jonathan kept walking around saying “Yummy in my Tummy.”  The little Pooh Bear.  All he wanted to eat for dinner was the cookies.  The rest of us had bacon sandwiches, black-eyed peas and fried potatoes.  I told Jonathan no cookies till he ate his potatoes.  He threw a fit and said “I go to bed.”  I stopped him and put him in the corner.  Karol offered him some juice and a slice of his cheese.  He returned to the table and slowly ate the cheese and drank the juice.  He continued to fuss and spit out the fried potatoes saying “They’re yuckie.”  Finally he put himself to bed.  He was wearing underwear and not a pull up.  When he woke me up at four in the morning he was still dry.  He was looking for the cookies.  “Mommy the cookies are gone.  The ‘tatos are gone.”  I guess he was hungry. {Note:  sometimes he has gender problems.  He will refer to boys as she, girls as he, me as Mommy and Mommy as Daddy.  Sometimes he gets it right.  I don’t think he understands that he goes males and she with girls.  To him they are interchangeable.}

Well Karol called me at work.  Seems Jonathan didn’t want to wear his vest to school this morning.  I told him to up it on.  He went “AAAAAA” real loud in phone.  I think he is trying to be “George of the Jungle’.  He got away with out wearing it to school yesterday. 

20 Jan ’00 Thursday

Last night we got three to four inches of snow.  Everything is closed.  Jonathan woke me this morning jubilantly saying “’Nowing! It’s ‘Nowing” We dragged my wife out of bed and dressed everyone warmly and went out to make a snowman.  Karol and Katy made the snowman.  Jonathan and I built a fire in the firepit and then threw snowballs.  They put a carrot for his nose, and gumballs from the tree for the eyes.  When we came in we had hot chocolate {Jonathan hot chocolate in soymilk}. We gave him his CLO in strawberry juice and he said “This is good”

As the day warmed we watched the snowman melt.  Jonathan at one point went out and said “Bye-bye Snowman.”

Yesterday Jonathan came home with a snowman he had made in art.  He told me about the “carrot for snowman nose.  Those are snowman eyes and That is snowman mouth”  Looked pretty good.

On Tuesday (the day before) Karol had to call me at work again to tell Jonathan to put on his vest.

On the Sunday before that (yes I know these are backward but that’s the way I wrote them), I looked out in the back yard and their was Jonathan with my yellow nylon rope.  He kept throwing it in the air trying to throw it over a branch and make a rope swing, like George of the Jungle.  I drilled a hole threw a two by four to make a seat and put the rope over a tree next to the fire pit.  The kids love their new swing.  They both swing on it and do their George of the jungle yells. 

For dinner we had roasted coated with carrots and potatoes.  Jonathan wouldn’t touch the potato’s saying “There’re Yuckie.”  Even bribes of juices would get him to taste the potatoes.  I offered him an orange.  No such luck.  Finally after forty minutes of fighting and screaming we offered him a (soy) cheese sandwich.  Which he happily devoured.

The next day was Lee-Jackson-King Day.  Jonathan got out the American Flag and recited the Pledge of Allegiance, twice from memory.

At eight, I caught Jonathan starting to run outside in the cold with out shoes to swing on the “George” swing. 

21 Jan ’00 Friday

I had to fight with Jonathan to get his vest on him today and get him ready for school. 

25 Jan ’00 Tuesday

On Sunday (the 23^rd) It snowed again.  The kids begged to go out and play.  This snow was not as good for packing and making snowmen.  Jonathan sat in the base of the snowman from last week and started playing “Nabio Fighter” from Star Wars.  He found a stick and used that as his control stick.  He sat there flying around the galaxy for about forty-five minutes.

On Monday still no school.

Well we got four more inches of snow, new snow and it is still falling.  Jonathan stood on the toy chest and told me all about the snow falling and laughed.  He told me that, “I finished my cereal,” and he took his bowl to the sink.

 By night we ended up with around ten inches of snow.  Jonathan crawled in the tub with me.  He came in the bathroom and pulled off his shirt and asked the magical question, “Can I get in?”  The way he asks is so funny.  His knees go together and he bends scrunches up a little.  His smiles beams and his eyes sparkle (cause he loves to play in the water).  How can you say no?  Before he climbed in he said, “We need some toys.”  Yeah right there is no we need, he needs.

Jonathan splashed in the tub and got my wife’s book wet.  After I dried the book I sent him down stairs to apologize to her.  He went to her and said “I sorry I splashed your book.” 

26 Jan ’00 Wednesday

Kids still didn’t have school and I didn’t have work.  Jonathan has been playing on that Vitech laptop like crazy.  Our biggest problem getting Jonathan ready for school is that he is camped on the PC.

 -- Last entry ---

You can start to see the changes in Jonathan, from his language and his actions.  Some things you can’t see from this are things like his increased eye contact.  His actually interacting with people, his sleeping all night (7pm to 5am).

The first and most important step is removing all of the gluten foods from his diet and the snack type foods from the house.  It will take four to twelve weeks to adjust his pallet to the gluten free foods.  Once they stop craving them and have them out of their system their choices in foods will increase.  Reintroduce new food once a week.  Make sure you give them a reward and that they know that they must taste it.  If it becomes a fight they will be so upset they will gag on anything.  Try a taste and reward system.

It has been well over two years and we do it with out thinking.  Every time I hear his voice and see him interact with children I see my reward.  He plays with his friends and looks like almost every other kid in first grade. It is worth the pain, the effort and the change in MY attitude.