Wednesday, August 31, 2011


Gabe can't wait for his birthday. He found out that it is six weeks and a few days after Fred's. He began focusing on the six weeks part. The trouble was Fred's birthday was still several weeks away. Gabe also knew that Fred's birthday was going to be on a Sabbath. So every week at church people kept coming up to Fred and wishing him Happy Birthday! Gabe was having trouble understanding - it's not this Sabbath, we have to wait a few weeks. It got to the point that he was almost mad at Fred for not hurrying up and having his birthday.
He really did get mad at me when I tried to explain. "Susan it's your fault. You didn't let Fred have his birthday." "If it weren't for me Fred would not have a birthday," I say. Gabe's not listening, but Fred chuckles. Fred is my only birth child. Gabe went on, "You can't stop it. So come on now, let him have his birthday.
When Gabe was done with his tirade I showed him the calendar once again. He really wasn't interested. "Just let him have his birthday, OK," he said as he walked out of the room.

Tuesday, August 30, 2011

Worthy is the Lamb

Gabe likes this song so much. He requests it every night before bed. He says "Find that boy that sings."
Every time the singer Jotta A. sings the phrase "Worthy is the Lamb" Gabe says, "That's Jesus." Gabe is working on learning the words to the song. He has most of them after only a few viewings. He sings right along with the video.

Monday, August 29, 2011

New School - again

The day before Gabe started Middle school, he stayed in bed until after 1 p.m. I began to worry that something was wrong. Finally I went in. He was buried under a blanket. "Are you awake?" I asked very softly.
"Go away! I don't have to go to school today!" he growled.
I realized that he was hiding. I went on about my business of putting away clean clothes. "Get out I said," he demanded as he sat up.
"I'm just putting clothes away," I told him. After about 10 minutes he got out of bed. He was already dressed. Angel told me that he got up much earlier while I was out for a morning walk and got dressed. Then he got right back into bed.
Later in the day we went to WalMart to get a new lunch box among other things. Gabe is grieving over the departure of his old lunch box. The zipper was not working well by the end of last year. Even though we cleaned it before storing it, it was covered in mildew when we got it out. It has to go. This is an unhappy day.
In WalMart the first thing we go to is the lunch boxes. They have dark blue ones the same color as his old one but a different style and ones the same style as his old one but green instead. Gabe grabs a blue one and declares, "Just like my old one." I start to show him the green one but he is not even going to look. I give up quickly. He's happy with the one he grabbed. No reason to look for trouble. He insists on carrying it through the store. "It's mine!"
As we walk through WalMart Gabe says, "Save money, Live better, WalMart" about once each minute. He's so stressed today that I decide not to try to stop him. He is really trying to be good today. Often, when he repeats a lot I try to break the cycle. I think that he needs help learning to control the cycling thoughts. When he is stressed I just let it go.

In Judith Bluestone's book -
The Fabric of Autism, Weaving The Threads into A Cogent Theory, By Judith Bluestone (2005) Sapphire Enterprises, LLC
she talks about learning to control the thought that cycle through. Once they start it is hard to stop them, but it is possible to learn to control what comes out. She also talks about the need to just release at some point.
Gabe walking through the store quietly repeating the advertisement is really not that bad.
Today I am thankful that WalMart has Silk soy yogurt. They only have it every so often. Gabe loves it. It's his pudding! I also find a good deal on gluten free crackers.
Gabe repeatedly asked when school is going to start, followed by I don't have to go today. At supper time he was still declaring I don't have to go today.

Saturday, August 27, 2011

A sneeze!!

So I'm sitting here at my computer working away. The window is open a crack. Gabe is outside in the yard. A sudden tickle in my nose brings on a big sneeze. From somewhere out near the back corner of the yard I hear "Bless you."
Gabe never misses a sneeze. It's night and he's been in bed for a while when an adult downstairs sneezes. "Bless you" we hear from upstairs.
Gabe was outside playing the other day when Fred sneezed twice in the house. "Bless you! Bless you" twice even before Fred had finished the second sneeze.
"Wow, he's fast with that," Fred commented. He's so on  target with it that it just makes us laugh.

Thursday, August 25, 2011

Book Reference - The Fabric of Autism

I have not finished reading this book yet, but I have found that some of the descriptions in this book describe Gabe. The book is -

The Fabric of Autism, Weaving The Threads into A Cogent Theory, By Judith Bluestone (2005) Sapphire Enterprises, LLC

In chapter 4 the author talks about hypersensitive and hyposensitive. An autistic child may feel so intensely that the feelings need to be blocked. That would explain why Gabe can't always tell if clothing hanging on the line in the back yard is wet or dry. There have been times when we were taking down clothing that was dry and filling the empty space with a wet item. I looked over just in time to see Gabe following behind taking down the wet ones that were just hung up. "Don't take down the wet ones," I said.
"What wet ones?" he responded.
"If they feel wet, just leave them on the line," I repeated myself.
"What wet?" was his response.
"I'll tell you what ones to take down," I said as I quickly checked several items. How can a person not know if an item is wet or dry I wondered. I'm not asking him to check seams for dampness, just don't take down the obviously wet ones.

In chapter 6 Muscle Tone and Readiness to Respond, the author describes learning to talk. She memorized scripts from TV and radio and practiced these over and over. "I marvel at how natural and easy it is for most people to tune their vocal cords, and to coordinate the movements of tongue and jaw and vocal cords and lungs to speak. And to do this without apparent thought and withour needing to lean on somethin for security. How can they still be upright?
"Before I turned 10, I learned to control sequence of tension and relaxation in these muscles, most of which I cannot see even if I look in a mirror. I produced speech sounds....I practiced incessantly, making up tongue twisters and singing along with the commercials on the radio:" (p 63).

This explains Gabe's 'need' to watch movies, the same ones over and over and then shout out the lines, sometimes at very inappropriate times. On page 64 the author explains how the use of a certain phrase from a movie will set off a major section of the script that follows that line running through her head and frequently out of her mouth. She laments that life does not follow a script. It would be so much easier that way.
I can see this desire to follow a script in Gabe. In fact when he first began to watch Wheel of Fortune he was confused. Game shows follow a format and have many lines that are repeated with each show, but then the puzzles are all different. There are different contestants each show, and while Pat Sajak interviews them at the same point in each show there is no predictable script for those interviews.

I look forward to the rest of the book. I have just begun some of the therapies. It is only a few days until school starts. I don't know how it will go, but in as much as the gluten and dairy free diet has helped, it has not been a cure all. I am still looking for additional help. I would like to see how close to 'normal' we can get.
I was a bit upset by the school psychologist last year who said, "just face it, he's retarded. He's always going to be, so nothing much is going to change it. She had only known Gabe for part of a school year. Why give up so quickly? She might be right, but we won't know unless we try. Also, I think that moving from significantly delayed to slightly delayed or whatever improvement we get is -well- an improvement.

Thursday, August 18, 2011

Monday, August 15, 2011

Too much Time

How can one person have so little to do, when another person has so much to do?
I was trying to get some sewing done today. Gabe had seen a bag of potato chips on the table. I promised him some at lunch. He had just eaten breakfast, a late one, so I told him that lunch would be in 3 hours. He watched his one movie of the day and still there was 1 hour and 45 minutes left until lunch.
I thought that he was just going to sit there on the couch and watch the clock until it was time for lunch! He whined about any of my suggestions. Unfortunately it was pouring rain so I couldn't send him out to play. Finally after about 45 minutes, he came and sat on the stairs that go through the sewing room. He began to talk to me about how much he liked potato chips. He used to eat potato chips when he lived in KY. On and on he went.
"You know how to read the clock," I said.
Since he was not getting anywhere with the potato chip thing, he began to obsess over the dust on the stairs. After a few minutes of this, he got up and went to get the broom and dust pan. He took plenty of time sweeping up the dust. Soon it was time for lunch.
"Thank-you for sweeping the stairs," I said.
"Now I can eat potato chips," he said.

Sunday, August 14, 2011

Knit puppets

Puppets like these are available from

Summer Camp

The first summer that Gabe lived with us, I took him to summer camp at Camp Mohaven. He had been there with me for a few weeks a few years before when his mother was battling cancer for the second time. I was working there then. But he had not stayed in a cabin as a camper.
Because of his special needs, the administration decided to give us housing in one of the staff rooms. Gabe would join up with a cabin of boys to go through the activities each day. As it turned out, the counselor that Gabe was assigned to was a good friend of Fred's and I knew him fairly well also. The boys that were in his cabin were mostly boys from our church so Gabe knew them some. I was happy with this.
What I had not expected was the first morning that we were there I realized that Gabe was looking every where for his mother. He had also come to this camp for weekend events with her off and on over the years. He was so sure that if he just looked hard enough, he could find her. When I tried again to explain to him that she was resting and waiting for Jesus to come, he just got very angry with me. "What have you done with her?" he demanded. "Where did you put her?"  It was hard to give him a specific answer. His mother had chosen cremation and her ashes were at a relative's house still. She had not actually been buried yet.
Other than looking for his mother, the rest of the week went reasonably well. Because I had worked there in the past I thought that maybe once he had settled in a bit I would be able to help out around the camp. It did not happen that way. Gabe did not want me to be right beside him most of the time, but he also did not want me to be very far away. He tried everything. I was so happy. When he had been there a few years before, he wouldn't try anything.
He could not wait for his turn to ride a horse. That is all he talked about. The barn director led the horse that he was riding. She told me that he quoted the story of Jesus triumphal entry the whole way along the trial. He just kept repeating. Gabe loves to quote Bible stories and put himself in as one of the characters.
He also did the craft projects, tried to play basketball with the other boys, loved playing fuze ball, tried soccer, went canoeing, and even got in the pool. The pool was the hardest thing for him. He wants to want to swim, but he wants to do it with out actually getting wet.
On Friday night, the worship is always the story of Jesus life. Gabe got so into it that I had to remind him to be quiet and just watch. He was ready to tell the story out loud. It became obvious to me as I watched Gabe watch the play, that he thought that the actor who was playing Jesus was actually Jesus. "I found Him,: he said in awe. "I finally found Him. He can get my Mom and me up to heaven." Wow, how do I handle this, I thought. At the end of the play there is the resurrection scene, followed by Jesus meeting again with the disciples. Then Angels come down over the hill and take Jesus up the hill and out of sight - to heaven.
"Oh he's gone," Gabe whispered. "But I saw him, I really did." An amazing sense of peace seemed to come over Gabe. "It's going to be OK, Susan. It's really going to be OK," he said as if he were comforting me.
As we walked back to our room I said to Gabe, "You know that was really one of Jesus friends telling his story. It wasn't Jesus."
"Really? Why?" Gabe seemed surprised.
"Because Jesus went back to heaven 2,000 years ago. But before He went, He told everyone to keep telling his story. So that was some body who loves Jesus. He was telling everyone the story of Jesus so that they would know it."
"But I saw Him," Gabe said, still in awe. He seemed so in peace that I decided to just let the topic drop for the time being. This attitude of peace seemed to stay with him for more than a week.

One of the things that I did while at camp was to donate some of my knit animal puppets to the camp store. The kids just loved these. Over the course of the years that I worked at camp, I sold hundreds of these puppets to eager campers. it became a big thing to collect them all. Below are some links that will show you these puppets and allow you to purchase some as well.

Saturday, August 13, 2011

Gluten and dairy free - issues and blessings

This will be a bit graphic. It is stated here to help readers who might be wondering about this diet be aware of potential issues and benefits,
A few weeks after Gabe became totally gluten and dairy free he began to have diarrhea. He had very messy accidents at school and at home. This took me by surprise. Gabe had struggled with constipation for years. Within a few days of starting the diet I thought that maybe he was becoming more regular. This was a bit hard to tell for sure because at 11 years of age I did not go into the bathroom with him unless needed. Yes I still had to help him with baths and sometime other issues, but I was trying to respect his privacy if possible. He actually did not seem to mind my presence there. Because of his delays his mother had also frequently accompanied him to the bathroom for various reasons.
As I stated - the diarrhea took me by surprise. It also surprised Gabe. One day I found him in the bathroom trying to clean up after a bad accident. This was one of the first ones. He was frightened that he would be in trouble - mostly because potty training had to be strictly enforced only a few years before. He had been made to scrub out his poopy under ware when he made bad choices. Now he was desperately trying to clean up after himself. He had tried to dump the poop out of his under ware but it just wouldn't come. He shook them vigorously. The result was poop every where but where it should be. It was all over him, up the wall, curtains and even a spot on the ceiling. It was smeared every where.
I asked him to just hold still while I surveyed the situation. He began to cry and shout trying to defend himself. I needed to figure out where to begin with the clean up. I wanted to put him in the tub to wait while I cleaned the room. Then he could get bathed and get out into a clean environment. He was so upset that he was not listening to anything I said. He just shouted nonsense arguments at me. it took forever, but we finally got cleaned up.
Once he was clean and much calmer, I stood him in front of me for a talk. I told him that he was not in trouble this time. I asked him if his belly was feeling different than it used to feel. He nodded yes. I said, "things have been rumbling around inside of your belly. Maybe you thought it was gas - you know, a fart, but then it wasn't. You are a big boy who is too big to poop in your pants. You need to just head for the bathroom every time you feel that strange feeling. Get right on the pot and then figure out if it is gas or something more. Pretty soon you will be able to figure out when you need to get there." Sometimes I tell Gabe things and I feel as though I might as well talk to the man in the moon. Other times it really seems to go in. This time it seemed as if he understood.
He had accidents a few more times over the next few weeks. Soon his system seemed to become much more regular. The belly ache complaints that had been so frequent before the diet and through the 'cleaning out' process slowly disappeared.
The blessings and benefits of this were that he truly seemed to feel better. His activity level picked up and he lost his chubbiness. He became a nice fit weight for his height. His grouchiness eased up some. Unfortunately, it has not totally disappeared. He can still be very grouchy and rude, but most of the time he is not.
I had taken Gabe back to see the doctor that he had seen many times before he moved out of state. We went for his first check up in early March, a few weeks after he moved in with us. I tried to talk with her about the gluten and dairy free diet. She said that she had heard of it. She would not really talk about it. When we went back 3 months later Gabe had lost the weight. She questioned me extensively about this. I told her about the diet. She wanted to know if he was getting a balance of other things. I assured her that he ate lots of beans and rice as well as vegetables and fruits. I fact, we had less food battles than previously. I should say - there were no food battles. I also mentioned that he had gone from a couch potato in a tiny apartment to an active child in a 2 story house with a big yard and several acres of woods to run through. We had also begun to get back on TV time as the winter snows melted and the nice weather appeared.
I was amazed at how well Gabe accepted his new diet. I told him that it would fix his belly aches. He did mention missing Pop Tarts and Mac & cheese. We did not eat any of this in front of him. However, we do belong to a camping club that goes 'backpacking' (1 mile to the same place each time) on weekend a month. We usually take Pop Tarts. Gabe, Fred and I were in the store shopping for food for the weekend. I very quickly spelled POP TART to Fred. Gabe shouted, "Pop Tarts," before Fred even figured out what I was trying to tell him. The irony of this was that Fred was an adult that had been reading since he was a toddler, and Gabe was an 11 year old with barely a kindergarten reading level. I guess it depends on what matters to you. We did not get Pop Tarts. We have slipped them along since then, but never eaten them in his presence.
I know of no substitutes for gluten free Pop Tarts, but we have found rice pasta and bean cheese that Gabe really likes. He gets that from time to time. The cheese costs about twice the price of other cheese and is not in most major grocery chains. I have to go to a specialty shop to get it. The rice pasta is carried in one of the stores that I shop regularly. It also is about twice the price of other pasta.

Just some hats

Gabe modeling a few hats for

Thursday, August 11, 2011

Getting to know Gabe Academically - Gluten and Dairy Free Diet

Even though Gabe was listed as a 5th grader, I wondered where he was academically. I played with him with word cards, numbers, and other concepts. I found that he could name one and some two digit numbers and count, but did not add or subtract without coaching and counters. He could read some kindergarten level words, but hated being asked to do word cards.
I had worked with other slow readers before, but never one that was this far behind. I wondered if I should even 'waste' time trying. Would it be a waste or benefit?
Meanwhile I began to read up on a gluten and dairy free diet. The readings told many stories of those who had tried it and the drastic changes in their lives. This diet was recommended for those with autism. Most readings said that while it did not work for all children, it did work for many. The difference was like day and night. However, a person needed to be strictly on the diet for at least 3 months to know if it would really work.
About 6 weeks after Gabe moved in, we started him on the diet. While reading up on it, we had begun to cut way back on some foods and just plain drop others out of his diet. It was winter time and I cooked big pots of beans, rice and vegetables on the wood burning stove in our house. We would eat this over corn chips. It was cheep, nutritious food. The only problem was that we liked this meal with lots of cheese on top. Cheese was now a no no for Gabe. I insisted that others not eat it in front of him. Because our kitchen is so cold in the winter time, we often eat in the living room near the wood burner. I would get Gabe's food first, and then we would ask the blessing, thanking God for his bounties. Then I would seat Gabe in his spot in the living room while other family members in the kitchen would bury cheese in their beans before coming to the living room.
We often watched Wheel of Fortune while we ate. Gabe had mostly watched videos in the past. Wheel of Fortune threw him for a loop. They say many of the same things each time, but of course the puzzles and contestant interviews vary each time. Gabe tried desperately to memorize it all. He quickly learned to shout letters at the TV. We worked on teaching him not to shout, while encouraging him to go a head and guess. He just shouted.
About 6 weeks into the gluten and dairy free diet, we began to notice that Gabe seemed to be thinking a bit clearer. We were not sure if it was just him getting used to our routines or a real improvement in his abilities. By 3 months, it seemed obvious that he had improved quite a bit, but it was not the day and night experience that we had hoped for. The changes were not drastic, but they were noticed by other relatives and friends who had known him for some time. They encouraged us to keep it up.
Being gluten and dairy free can be challenging. It was almost unbelievable to me the number of foods that have wheat, oats, rye or milk in them. It is in so many processed foods. It also makes eating out or even with friends a challenge.
I learned to carry food along if we were eating somewhere other than home. I found ways to keep appropriate snack in the truck so we would not be caught off guard. This was difficult at first. It is a whole new way of thinking. The crackers, etc that I had kept on hand for my other children were now useless to this situation.
By 3 months into the diet, I decided that Gabe probably could learn to read. He really liked Bible stories and music. I wanted to get away from some of the movies that were his favorites. We were all so tired of some of the lines that he continuously shouted at us. I had limited him to movies only on days that were not school days. Now it was summer and he wanted a movie every day. I did limit him to one movie per day. I wanted him to play outside. I got some DVDs from the local dollar store. They were Bible stories and children's religious music to go with the stories. There were pictures and words. It was set up karaoke style. As the narrator read the story  a red line followed across the words. It was the same for the songs. Since Gabe liked to memorize, I thought that he might also learn some more reading with these. He enjoyed the DVDs, but got mad at me when I tried to show him how they were reading the words. I showed him at various times anyway, until I felt sure that he understood. I didn't point this out every time that he watched them, just sometimes. I wanted him to like the DVDs.
Gabe also had many Bible texts and hymns memorized. People were amazed at how many of them he knew. However, I realized after listening closely to him that he was saying or singing a combination of real and nonsense words. The nonsense words sounded similar to what the real words should have been. It was obvious that he didn't really understand what he was saying. I began to use familiar texts and hymns to teach him to read. At first he was shocked and mad at the 'wrong' words that I was making him say. I pointed out that the words printed were the real words. I did not want to push the fact that he had been wrong all this time. Gabe is so tired of 'getting it wrong'. He wants to be right. I think that is part of why he shouts things. If you say it with enough force, you must be right. As we read, I just continued to point out to him that learning to read helps make sure that you are right. I kept emphasizing  the idea that he could get it right every time with a little practice. "After all, you already know most of it!"
We did not read a lot every day. I tried to read with him one or two days a week. If I tried any more than that, he would just rebel. One thing that we did do almost every day was family worship. The class that he was in at church had Bible study guides for kids (his age - well he was 11 yrs old in with the 7 & 8 yr. old). The Bible study guides have a memory verse for each week. We made him learn to read the memory verse by practicing it at every worship time. At first he didn't like this.Then he began to realize that he really could learn to read these verses. Oral and visual memorization began to come together. The oral had always been there, now the visual was beginning to kick in with it.
Gabe knows many phonics rules. As he practices reading he randomly shouts them out. It is obvious that he does not know how to apply them. It is also obvious that his teachers have really tried to teach him phonics and sounding out new words. At this point I figure that Gabe will be a sight word reader. I will not bother with phonics for him. (Phonics are valuable tools, and I have used them successfully with other students).
Over the period of the next school year (6th grade), Gabe's reading abilities improved to the point of 1.9 by my educated guess. That means that I believe his reading level to be at the end of 1st grade. That is slightly more than one year of improvement in a year. As the following summer progressed, Gabe's reading ability continued to improve.
Interesting to me, was the parent teacher conference near the end of Gabe's 6th grade year. His teachers were not really seeing a big improvement in his reading ability. They were seeing that his math skills had improved the most. Personally, I had not seen any improvement in his math skills. He still needed counters and coaching to do sums up to 10. This is kindergarten level.
This really made me wonder. I would like to be a fly on the classroom wall. Well maybe not a fly. Gabe loves swatting bugs - but something small -you know. Well that can't happen. We'll just keep trying.