Saturday, December 3, 2011

Christmas Concert

In a nearby neighborhood there is a Christmas concert that is held every year. As I sat with Gabe during the concert, he wanted to sing the songs he knew. It took me down memory lane to when he was about 4 or 5 years old. Gabe's mom DJ just loved to sing. Every year she joined the Christmas choir. Gabe would go with her to all of the practices. At the concert he knew all of the words to all of the songs. He would sit with me and sing along with the choir. As long as he sang quietly I would let him sing. He would get mad at me when soloists got up to sing. He knew all of their songs as well, but I would not let him sing along with them.
Gabe really has a love for music. He is looking forward to his turn to sing in the choir. I don't know if he will get a turn or not. He has a definite speech impediment and doesn't really carry a tune. He is not particularly aware that he is not on key, but he sure does love to sing out.
Gabe has sung special music at church. It's a little different than singing with the choir. People know that this young man is doing his best. They are not trying to sing on key while standing next to him.
Maybe he will get a turn, who knows.

Friday, November 25, 2011

Where's the Music?

It seems that Gabe always wants some type of media running. His preference is movies but if he can't get that he wants CD's with stories or music. Because Gabe often chooses to shout phrases and lines from the movies or stories I have decided to really limit the amount of movies and stories he plays. Because his fine muscle coordination is not good, he is not allowed to touch CD's and DVD's, because I don't want them all scratched up.
Tonight Angels' friend Marv came over. He is very musically talented. He, Dirk and Fred 'jammed' together on piano, violin, guitar, and banjo taking turns playing the various instruments. It was glorious! In the midst of all of the beautiful music Gabe comes after me. He is angry because I promised a CD earlier when I had no idea what was about to spontaneously happen right there in our living room.
"You said you would put on music!" he shouted.
"Relax and listen," I said, "and you will hear music."
Thankfully within a few minutes he was singing along with them.

Sunday, November 6, 2011

Beautiful Day

Today was a beautiful autumn day. Gabe was up bright and early. For some reason I was incredibly tired and wanted to sleep in much longer than usual. Gabe came into my room and asked for clothes. I handed him clothes and laid right back down. He dressed and came back asking for pancakes. "I am really tired and need to sleep longer," I said. "Please play in your room for a while and I will make pancakes when I get up."
He said okay and went back to his room. He stayed there quietly until I got up. He was so peaceful and sweet this morning. After breakfast Gabe wanted a movie. I told him that chore come first. "It's a beautiful day and there are plenty of leaves to rake."
He did question the leaf raking but was not too sassy and rude about it. He went out of the door saying that he would get every leaf raked and then come back for the movie. A while later I went out. Gabe was busy raking. He had giant piles of leaves that he was trying to move towards the woods. I got the yard cart and went to help him. He questioned what I was doing. When I explained he was happy to work with me. We moved several cart loads (12 -15) of leaves into the woods. I complimented him on how well we were able to work as a team. He raked for over an hour. I let him take a break and watch the movie that he wanted.
Later in the afternoon Dirk got out the leaf blower. Gabe wanted to use it. It is a small electric one. Gabe moved many leaves with it. He made great progress once he got the leaves headed the right way. He did whine a bit when I first asked for a turn for just a few minutes. I was hoping that he would watch me and figure out how to get the leaves going correctly. He did watch, and he did much better afterward. He worked for a few more hours. If he had been totally effective in his efforts the yard would be well done. As it is, a major section of it is pretty well done.
All in all, it was a good day.

Tuesday, November 1, 2011

Flying Deer

So we're driving to school this morning just before sun- up. A deer ran across the road in front of us so I braked a bit.
"What was that?" Gabe asks.
"A deer," I replied. "I slowed down so I wouldn't hit it."
"It can just fly," Gabe says.
"Deer don't fly," I tell him.
"Oh yes they can! Santa Claus said so!"

Monday, October 31, 2011

Fuzzy Thinking

Just after I walked in the door from school with Gabe, Angel says, "Gabe's teacher called. He threw up at school."  I look at Gabe.
"I'm so sick," he says. He has been with me for the last 20 minutes but never said anything before this.
"I think that you should drink water." Gabe drank a few cups of water over the next half hour. Soon he is begging to eat. "I want you to wait a while to see how you do with the water before you eat anything."
Gabe starts to argue. "But Dad said I can. He has my stomach."
"What?" I ask. I want to be sure I heard straight.
"It's because of you," Gabe replies. I can see this conversation is going nowhere, so I decide not to reply.
Soon Angel comes into the room and sits beside me. We exchange a few sentences about baby Maree who is asleep in her arms. Then the conversation drops. For a minute there is silence. Then Gabe points his finger and says, "Just leave her alone. I said leave Angel alone!" This is totally out of the blue.
Today has been better than yesterday (Big bad mouth day), but not as good as some days.

Sunday, October 30, 2011

Big bad mouth

How can a kid be so sweet and good one day and so rotten and nasty the next? Yesterday Gabe was sweet and loving most of the day. He woke up this morning still in a relatively good mood, but with in a short time it really went down hill.
The day was filled with many ridiculous comments, arguments and mean words. Gabe is asked to do chores on many, but not all days. One of the chores that he is able to do is sweep the stairs. This is not a hard job. It involves a small soft brush and a dust pan.
This morning I tell him that the stairs need swept. "Do I have to?" he whines.
"Yes, please do."
"Why do I have to sweep the stairs?" he whines. This time a bit of sassy argumentative tone also comes into his voice.
"Because they need it and it is your job," I tell him.
"Guards arrest this woman!" he shouts. "She should be taken to prison now. It's because of you Susan! Dad said I don't have to!" All of this is said in a very angry tone.
"You need to calm down and sweep the stairs," I say.
"I'm telling Dad. What have you done with him? Where did you take him?" More angry demands.
"You know he went camping and will be back later today."
"It's because of you," he scowls. "You are so mean to me."
"Stop talking and sweep the stairs before you get into trouble," I say. Gabe thrusts his face at me with his teeth barred much like an angry dog. "Enough, now sweep." I use a stern tone.
Gabe swipes at the stairs getting about half of the dust. All of the corners have been missed. This is the usual way it goes with him. "I'm done and you can't stop me!" he says very rudely.
"Let's check to see if all of the dirt is gone," I say. "The point of sweeping to to get rid of the dirt." I began to point to a few of the missed areas.
"Will you just leave me alone," Gabe waves the dust pan in my face.
"Put the dustpan down and listen," I say. At this point I am choosing to keep my voice very even.
"Just go away." shoulder and elbow up towards me, "I'm getting it.
"You had better get it all. I will che...." Gabe interrupts again with a bunch of nonsense yelling at me. "Stop talking," I say. "All that is coming out of your mouth is very rude this morning."
"But you.." he starts in an accusing tone.
"Enough! No more talking. Sweep and think about using nice words."
"But you are being mean to me." He still argues pointing his finger.
"Quiet and put your hand down." I turn and walk away quickly. I do not want to continue arguing. What has brought this on, I wonder.
As the day progressed there were several nonsense arguments and accusations. One of them involved a movie that he has watched too many times recently. Gabe keeps asking me if my dad likes a certain imaginary object from this movie. I tell him that Grandpa doesn't watch TV or movies. "Just answer me now! I said does your dad like ...? "
"Grandpa is my dad, and he hasn't watched that movie."
"No! Grandpa is MINE!" Gabe butts right in. "I had him first! I SAID, does your dad like...?"
"No he doesn't!" I say.
"I SAID, does your" Gabe is shouting. This time I butt in, "DO NOT ask that question again! It does not make any sense. You have not listened to anything that I am tel.."
Gabe shouts, "I SAID.."
"Close your mouth!" I demand. "You are done talking for a while. Not another word." Gabe has asked and asked that same ridiculous question several times already today. He kept asking it several times a few days ago. I have already told him that he cannot ask it again, because there is no real answer to it. This has not stopped him from asking and getting nastier each time. What is printed here is the short version. It has gone on and on.
After being told that it is a nice day and he cannot watch a movie at this time, Gabe storms out of the house. "I can if I want!" he shouts as he goes out of the door.
About 10 minutes later I finish the task that I am working on in the house. There is much yard work to do. Gabe has been instructed that since he is the teenage boy in the household, it is his job to rake the leaves. It is a big yard and I know that he can't do it all. It has rained much of the week, but has been nice for 2 days now. No raking happened yesterday so there is much to do today. I decide that I am going to rake for a while today. Gabe is swinging on the tree swing when I enter the yard. "You can't come out!" he shouts. I have already gone several rounds with him today that have included instruction and time standing by the wall. I decide to act as if I haven't heard. I pick up the rake and begin to rake a little way from where he is sitting. "Do not touch that rake," he yells. "I said put it down now!"
At this point I drop the rake and go to where he is. "OK," I say, "if I'm not going to rake these leaves then you are. The job needs done and someone has to do it."
Gabe looks shocked. He has been so busy making demands that he has not thought through what he is saying. "But I just can't. I'm having a stroke," he argues. I have no idea where he has heard about strokes. He grabs his chest, "See it's a stroke right here."  I do not know whether to laugh or scream.
"Go get the rake and get busy." The ridiculous arguments continue for a few more rounds with him coming up with bizarre excuses and me replying with "rake the leaves." Finally I say, "Not another word. Rake!" And then I walked away.
These are just a few of the ridiculous things that went on today. It went all day long. When the guys got home Gabe started right in with them. I could hear him outside making all kinds of crazy demands and insisting that I said he could do it. The thing that he was arguing most about was a party that he decided was going on somewhere and he had to go. In reality there was not party to go to. He continued to insist, "Mom said I could." He had gone through this with me earlier in the day but it was "Dad said I could. He's going to take me." No amount of explaining would convince him. He ended up facing the wall again. But nothing stopped him from talking nonsense, making crazy demands and saying rude things. Even as he was headed for bed he was announcing, "I have no school tomorrow. I'm not going."
"Believe me, there is school and you are going." I feel bad for the sub teacher that will be there, but then tomorrow is a whole other day and we could be back on sweet and nice. I hope we are for that sub teachers sake, not to mention my peace of mind.

Sunday, October 23, 2011

The Bee

"Come quickly, there's a bee in my room!" Gabe called.
"I can't come right now," I answered. "Just go get your shower and you will be ok."
A few minutes later - "It's Okay. I killed him dead three times." he called down the stairs.

Wednesday, October 19, 2011

Today

I was washing dishes in the kitchen when I heard a very strange sound that must have come from the bathroom upstairs. As I headed toward the stairs Angel stated that she also had heard a worry some noise. I ran up the stairs and from Gabe standing in a puddle of water. There was water all over the floor. His bath towel was laying in the middle of the mess. He was standing there silently with the light off. I think he wanted it all to just disappear. I know I did. I was trying to hurry through dishes and now this mess.
Gabe had decided the the toilet needed plunging. That was obvious by the soaking wet plunger sitting in a puddle on the floor. Gabe wasn't talking. He just began to cry. He has been told repeatedly that if the toilet does not work right - don't not flush again - don't do anything - just tell an adult that it is not working. I let him know that he would be punished for the mess. He also had to just stand in the bathtub while I cleaned it all up. He stood there and sobbed. For once there was no arguing or blaming others. Just apparent remorse.
I think he was trying to be grown up. The trouble is - every time he decides that he is grown up enough to do something that has been forbidden a mess happens. It just never works out right! It is best to just follow the rules. There are good reasons for them.

Yesterday

Gabe was playing outside. Suddenly he ran down the driveway and knocked on the door.
"Come in," I called. "You live here." Gabe still knocks sometimes instead of just coming in. When he was little his parents repeatedly reminded him that you knock when you go to someone's house, you don't just charge right in. He visited us many times in his early years, with many reminders to knock. Now sometimes he still knocks and won't come in until someone opens the door.
Gabe continued knocking. I decided to just go open the door. There he stood with 3 small twigs with bright red leaves on them. "I've brought you flowers!" he exclaimed in a flamboyant way.
"Well thank you!" I said, trying not to laugh.
After giving me a big hug he said, "Now go put them in water on the kitchen table before they die."
I debated informing him that they were leaves or just going along with the flowers thing. I decided to just go ahead and put them in water.

Monday, October 10, 2011

Who kicked me?

The other day we were at a restaurant. We were sitting in a booth. Gabe was seated across from me. He got up to get more salad. When he came back he ever so lightly bumped my foot as he got in.
"Hey, why did you kick me?" he demanded.
"I didn't kick you. My foot was still." I said.
"I'm telling Dad. She kicked me!," Gabe says to Dirk. In all of his moving around Gabe bumps my foot again. "She just kicked me again!" he exclaims.
"I have not moved my foot," I said. "You are moving around and have just barely bumped my foot. I wouldn't even say anything about it except you are making up stuff about me."
"She kicked me, " Gabe continued. He said it several times. "Arrest her."
"Listen, " Dirk said. "You have to know the difference between being kicked and a light bump. No one kicked you. You bumped her." This conversation cycles through a few more times before Gabe gives up his accusations and eats.
We go through these types of conversations daily. On a really good once in a blue moon day, we manage to get by without one of these types of conversations. Most days have a few of them. Really bad days, the nonsense will go off and on for hours. Sometimes the accusations come out of thin air. Nothing has happened, Gabe is just accusing. He can be so cute and sweet one minute and then suddenly very argumentative the next minute.
After Gabe calmed down about the foot incident, he just kept looking out of the window and giggling. There seemed to be nothing in particular out there. Whatever it was, he found it funny. He was so cute about it.
However, on the way out of the restaurant, Gabe announces that Angel can't ride with us. "There's just no room."
"I bought this van. It is mine. I like to share my van. Because I am sharing, there is lots of room for Angel." I wanted to model sharing for Gabe. He still whines if anyone touches his stuff. He can also be very grabby and quickly claims anything that he sees that he likes. We have heard way too many selfish "MINE" incidents. I have made a conscious decision to verbally share.

Thursday, October 6, 2011

New Baby

Angel came home from the hospital with baby Maree on a Tuesday night.  Of course Maree was awake off and on all night long. I had taken some days off of work to stay home with Angel and the baby and got up through out out the night with them. I could hear Gabe turning in his bed in the next room.
I had decided to let Gabe stay home from school the first day that the baby was home. Most mornings when I go in to get him up he shouts things like - get out of my room or I'm going to call the cops - or -I don't have school today so go away - I'm too tired, I just feel sick so get out. Wednesday morning Maree was crying with every ounce of energy she could muster. This was about 15 minutes after Gabe usually gets up. This morning he got out of bed with out the usual complaints. Instead he stood in the hall with his hands over his ears complaining that the baby was crying in his ears.
"She's crying in my ears," Angel said. Gabe didn't seem to notice the comment.
"Make her stop. What's wrong with her?" he asked.
"You don't have to be up," I said. "You don't have to go to school today."
"Oh yes I do!" He declared. "I need to ride a bus NOW. Get me to the bus.What's wrong with her?" The conversation went around a few more times.
Gabe went into our bedroom where Dirk was getting ready for work. I could hear Dirk explaining over and over that babies cry. They cry a lot sometimes.  Finally Gabe gave up and crawled back into bed. I was glad he did. I was so tired that I wanted a few more hours of sleep.Maree stopped crying and we all got a little more sleep.
I have never heard Gabe beg to go to school before.

Sunflowers

Earlier this summer Gabe, Angel, and I attended a good old fashioned Camp Meeting. We stayed in a tent all week. Gabe really enjoyed the classes for the 7-9 year olds.
On Friday he came back to the tent with a tiny flower pot. "It's flowers," he said."We put them in this morning."
"What kind?" I asked.
"I said it's flowers!" he replied.
I added a little water to the dirt and set the pot on the dash board of the truck. By Saturday morning there was a little green 'knuckle' sticking out of the dirt. Later that day the flower was up enough to start opening it's leaves and there was another little green knuckle. By Sunday morning it was obvious that there were 3 flowers in the pot. I put the pot in the cup holder. As we drove the 2 hour trip home a total of 6 flowers came up out of the dirt. The first one grew and additional inch. It was like watching slow motion photography only it was happening right in front of us.
About a week after we got home I transplanted the flowers into the garden. 4 of them survived.This picture was taken about 3 months later.
Several more blooms appeared after the picture was taken.

Wednesday, September 28, 2011

Saving Angel

Angel was in the hospital about to deliver her first baby when Gabe arrived. He had gone camping for the weekend with Dirk and Fred, but the trip was cut short when I called and said that we were headed to the hospital.
It was now midnight as they arrived. Gabe was tired and concerned. He had been waiting and waiting for weeks now for someone to 'get the baby out of Angel'. As soon as they arrived he demanded to see her and the baby. I told him that the baby was not here yet and that they did not allow children in the room where she was. I said, "You need to go to Grandma's and get some sleep. The baby will be here in the morning."
"I need to see here now!" her demanded.
Just then a cousin who had been back in the room with Angel came out and said, "She's getting the epidural."
Another cousin who was there in the waiting room said loudly, "Oh, she's getting the BIG needle!"
This really set Gabe off. He HATES needles. He began crying and really begging to go save Angel from the needle. "They're not going to hurt her!?"
"She is going to get something that makes sure that she doesn't hurt," I looked for the best wording on the spur of the moment. Gabe's mother went to the hospital and died and now she doesn't hurt anymore. I did not want to say anything that would worry him more.
"I have to see her," he whined.
"It will be hours of waiting," I said. "It will go much faster if you are sleeping at Grandma's. I promise that you can see here tomorrow after you sleep at Grandma's. I will come and get you."
"I can hold the baby?" "Probably," I answer.
After several rounds of this whole conversation, Gabe left with an aunt to go to Grandma's. He was still whining and saying, "They're not going to hurt her? & I get to hold the baby tomorrow." repeatedly as they left.

Sunday, September 11, 2011

Why cry over clean sheets?

Why must Gabe cry every time I wash his bedding? I have thought about sneaking to wash it, but that is not always possible. I work school days. Besides I think he needs to learn to handle it.
Washing the sheet is not so bad. He has started to get used to that and only whines and asks if I will give it back. The problem comes with washing blankets. I noticed that one of his blankets smelled BAD. I told him that I was going to wash it. His response was, "No, it's mine." A short while later I went to get the blanket.
"It's time to wash it," I said. He started crying and demanding that I give it back. No amount of explaining helps. In fact, it seems to make things worse.
To make matters worse, Gabe sleeps with a pile of stuffed animals. I have tried to keep all of these critters out of his bed with a few exceptions. He just goes and gets them all and puts them back in. Well, some of those stuffed animals smelled bad too. They need a 'bath' in the washer. They will be back by bed time. This brought on a full melt down! There was much wailing and many rude comments.He would not listen to anything I said, so I gave up explaining and walked out of the room.
The laundry always comes back!

Wednesday, September 7, 2011

You or Me or WHO?

I was in the kitchen cooking. Fred was in the kitchen too. Suddenly Gabe comes running into the kitchen and kicks Fred. "Hey,"  Fred says and Gabe runs back out of the kitchen laughing hysterically. "Don't kick!" Fred calls after him.
A few seconds later Gabe runs right back in and kicks Fred again. This time Fred kicks him back. It's not a hard kick, but he does connect. "Ow," Gabe whines, breathing hard through his teeth.
"I'm going to kick you every time you kick me," Fred says. With that Gabe laughs and runs back out of the room.
About 30 seconds later he's back trying to kick Fred again. Fred tries to stop him. "This is not cool," he says. "I could really hurt you." Gabe is still trying to kick Fred. Fred asks, "Who is bigger, me or you?"
"Me," Gabe responds. (Fred is almost 2 ft. taller than Gabe). Gabe runs out of the room.
"Wow, I thought that he knew the difference between big and small, " I say to Fred.
"I think he knows," Fred says. "He's just cocky." With that Gabe is right back into the kitchen, still laughing. Fred grabs a big bottle of juice and a bottle of salad dressing from the shelf and holds them out in front of himself. This stops Gabe. "Which is bigger?" Gabe points to the juice." See he knows," Fred says.
"Well I thought so," I say. Gabe has run out of the room and is now back, still laughing and trying to kick Fred again.
"Who is bigger?" Fred asks again. "ME!" Gabe says.
"Stop kicking!" I say. Gabe runs back out. I turn to Fred and say, "maybe it's cocky, but maybe it's still more of his you or me troubles. You asked the question and you are the 'me' in the question and so maybe the answer is 'me'. That's not the proper way to answer, but maybe that is what he is saying."
"Hm, could be," Fred says.

See Gabe's Story - part 2 a July 14 post. We have struggled to teach Gabe the difference of you and me and when to use each one. At this point he gets it right more than wrong, but there are still inconsistencies. He still loves rowdy play as long as he is dishing out and not receiving. He will whine or cry when it comes back his way. He does settle down or stop more quickly than he used to. Some times a short specific phrase will do it.
Some times it takes much more.

Wednesday, August 31, 2011

Birthday!

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."
http://www.youtube.com/watch?v=1uoFq-Pzldg
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 www.susansweaters.etsy.com

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.

http://www.etsy.com/listing/30144406/knitted-lion-puppet
http://www.etsy.com/listing/71573473/knit-tiger-puppet?ref=v1_other_2
http://www.etsy.com/listing/37930181/skunk-puppet-knit
http://www.etsy.com/listing/72589805/25-snake-finger-puppets-for-cuddlebabies

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 susansweaters.etsy.com

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.





Saturday, July 23, 2011

Gabe's Story - First day at a new school

I followed Gabe and his teacher down the hall to his classroom. The bus had been a few minutes late and the 2 aides in the room had the other students seated and ready to start school. I was introduced to the aides. They showed Gabe where to put his coat and lunch. They then showed him to his desk. He seemed initially to avoid my presence, which rather surprised me. But he kept sneaking glances at me as I sat in the back corner of the classroom.
I was handed more paper work to finish. I was also introduced to a lady from the county education office who was there to make sure that Gabe's placement was the best one for him. After a very brief conversation with me, she went and sat next to Gabe. The teacher was placing large photographic cutouts of standard coins - penny, nickel, dime, & quarter on the board at the front of the room and calling on students to name the coins and say their worth. Gabe quickly had his hand up. I wondered if he knew them. Soon the teacher called on him. He answered correctly. Then he looked at me and gave a thumbs up. I gave him the thumbs up in return.
I stayed for about 10 more minutes, then I had to get back to work. I went over to say good bye to Gabe. He gave me the elbow and looked annoyed. I told him that I would see him at home after school and then walked to the door. I paused to make sure that he was fine. He gave me a quick glance and then turned his attention back to the teacher.
She was a very dynamic person. As I walked down the hall I wondered if she gave such a good performance all of the time, or only when she was being observed. It seemed as though Gabe would be just fine in that classroom. The elbow in the ribs told me that he was ready to try this 'by himself'.

Thursday, July 21, 2011

Gabe's Story - moving in

It was late at night and the snow was deep when we arrived home. I set out to help Gabe get ready for bed and settled in to Fred's old room. He was cranky and confused. I sat with him for quite a while waiting for him to fall asleep. Finally I assured him that I would just be in the next room. We went several rounds with this conversation as I tried to assure him. Finally I told him, "you will be okay. I will be in the next room." I wished that I didn't have to work the next morning. I knew that I needed my sleep to function properly on the job.
In the mean time, my husband had removed the big wooden sword from the back of the truck and secured it in the barn. We debated on the proper way to handle it. The only thing that we were sure of was that we did not want that sword in the house.
When Gabe woke up the next morning, the first thing that he wanted to do was get his stuff out of the truck.I was there briefly while on a break. He did not want breakfast, just his sword and other stuff. He was told breakfast first. "Where are my Pop Tarts?" he demanded. He had eaten Pop Tarts every morning at his old house. In fact it was a ritual that he went to the cupboard, got out a pack from the box, went to the toaster oven and opened them, bit the right corner off of the Pop Tart in his right hand, and then put them in the oven. He shut the door and gave the knob a quick crank. It was both my and Angel's observation that some mornings he had slightly warm pasteries while other morning they were well done. He ate them either way.
There would be no Pop Tarts for breakfast at our house for 2 reasons.
1) We just don't eat Pop Tarts for breakfast often. We try to be healthier than that.
2) While cleaning out his mother's bedroom we had come across information on how a gluten and dairy free diet has helped some autistic children. I was not ready to be gluten and dairy free yet, but I wanted to look into it. It seemed better to leave the old Pop Tart habit at the old house. If we did not end up gluten free, he could have them as an occasional snack at a later time.
I was only home briefly, leaving my husband Dirk to deal with the issues. He was unemployed at that time after 25 years with his previous job. I went to our local school to get Gabe enrolled.
The school was very glad that his previous school had given me copies of all of  his records.I told them that I would like to keep the records, but gave them permission to copy anything that they needed. They were happy to get all of it on the spot. Because Gabe had to be placed in a special class it would take a few days to figure out the best placement based on his current records. His previous teacher had included a phone number so that the school could call and talk directly to him if they wanted to.
Because of the fact that it would take time to choose the right program, the fact that the school had a teachers meeting day, and the mounting snow that resulted in snow days, it was a week before Gabe started school. We hyped up how much fun making new friends would be. He pined for his teacher at his old school. "Just call him, I know he'll come," Gabe said over and over.
"He can't come, it takes 6 hours to get here." We argued over this several times each day. Other discussions that repeated frequently involved topics such as Why did you steal me? Why did you steal my stuff? Why did you steal my mother? What have you done with my mother? and other similar subjects. Nothing that we said made a bit of difference. After a few rounds we would just tell him that he needed to listen and think about what we said. No more asking now. We told him that we knew that he missed his mother very much. We miss her too. We will see her again when Jesus comes and takes us all to Heaven.
The night before Gabe was going to his new school he repeatedly asked if he was going to school the next day, and then followed this with a matter of fact statement that there would be too much snow to go. Sensing that all of our hype had not worked, I asked him if he was excited to go make new friends. He just stared at me. Then I asked quietly, "are you scared?"
"Yes," he said in a tiny little voice.
"It's okay to be a little bit scared," I told him.
"I don't have to go?" he asked.
"You are going to a new school. It is going to be a good place so you don't need to be a lot scared. A little bit scared is okay though. I have to go to work early tomorrow, so Uncle Dirk will get you ready for school and help you get on the bus. I have a break in the morning. Would you like it if I was standing on the side walk at your school when your bus got there. I could go in your new school with you."
After several rounds of this conversation he finally said, "You will be at my school? You can go in with me? Okay."
The next morning I was standing on the sidewalk in front of the school when Gabe's bus pulled up. His new teacher was standing there too. He started to hold my hand as we walked into the school, but then switched to holding the teacher's hand. I felt rejection and yet glad, because it looked like the transition would be reasonably smooth. We walked down the hall towards the classroom.

Wednesday, July 20, 2011

Gabe's Story - packing up

After Gabe's Mom passed away the relatives began to dismantle the apartment. All of the people in his mother's bedroom going through her things really upset him. "Why are you stealing all of my mother's stuff?" he screamed at his older sister and the other relatives who were helping her. Repeatedly we told him that his mother had given her stuff to his big sister. He would calm down and then flare back up. We went through the same conversations over and over.
It snowed and the memorial service that had been planned for the weekend was canceled.
First thing Sunday morning  I began to pack up Gabe's room. At first my son Fred, was able to distract Gabe and keep him out of the room. This let me sort out too small clothes in peace. But it was a small apartment and soon he came into his room. "what are you doing? Why are you stealing my stuff?" he screamed waving a big wooden sword in my face. The sword had come from a renaissance  festival. It had become a major nuisance.
"I'm not stealing your stuff," I said. "I'm making sure that you get to keep it. Remember how I said that you have to move?"
He wasn't listening. "guards, arrest this woman. She's stealing my stuff!" He waved the sword at Fred.
"She's not stealing your stuff." Fred said. But Gabe was not listening. He flared up all morning long, waving that sword, accusing people of stealing and demanding that people be arrested, and demanding to see his mother. There was a lot of crying that day.
"I know that he really likes that sword, but there's no way that he is going to walk around my house waving it and demanding that I be arrested all day long," I said to my husband.
When I began to pack Gabe's toys, he grabbed a large crocheted bag and began to stuff toys into it as fast as he could. "These are MINE! You can't touch them!!"  When the bag was stuffed he hauled it outside and flung it into the back of the truck. He continued to scream at my husband when He tried to move the toys to a better position.
By 10 a.m. I was exhausted emotionally. I said to my daughter Angel, "I'm going to say something that you will not hear me say very often if ever again - Find that cartoon network or something and watch TV with him for the rest of the day so we can get something done around here." At this time, it seemed as if Gabe was a TV and movie addict." The TV had been off most of the time since I had been there. This had made him almost crazy, but the adults had stood firm. Now I caved. We would be leaving the next day to start a 'new life' again. One last movie marathon at the apartment just might let us get the packing done.
Gabe stood in front of the TV shouting the memorized words at the TV a second or two ahead of the movie. Angel complained that he was ruining the movie. "No one is having a particularly good day." I said. "Your job is to keep him occupied."
By late afternoon I thought that we were almost done. Late that night we were still almost done. I was a tiny apartment and I couldn't believe that going through it could take so long
Also late Sunday afternoon Fred left with an aunt to go back to college. While Gabe knew Fred well, he didn't really know that aunt that much. "Why is she stealing him?" he demanded to know. Once again he did not listen to the answers. "Arrest that woman! She's stealing my Fred away from me." This started a new cycle of craziness, demands and tears. As the evening passed all of the relatives left. There was just Gabe, Angel, my husband and me.
"Susan, you did it. Where have you put my people? Give them back now! I said now." It was late now and he was tired. I tried to assure him that he would see them all soon. He just kept demanding that I get them back now. Getting him to bed was difficult. We had packed his dresser in the truck, but had decided not to take the bed. We did not have a place to put it in our house. I sat on the floor by Gabe's bed for a long time that night. Finally he dosed off.
Monday morning found us scrambling to get out of the house. We had a 1 p.m. court date and then we had to get back home. I had to be at work early the next day. We insisted that Gabe's sword ride in the back of the truck and not the cab. However, his big black stuffed dog, several blankets, and a pocket full of random keys were allowed in with him. We would have allowed a few other toys too, but this (plus the sword) was all he really wanted. He was very angry that the sword was in the back.
At the courthouse the pocket full of keys resulted in a melt down. We do not frequent courthouses and had not even thought about the metal detectors. Gabe had to empty his pockets into a basket. He refused. The woman guard asked us to stand back while she politely but firmly worked at convincing him to put his things in a basket. After about 10 minutes of him yelling, "Guards, arrest this woman, she's stealing my stuff!" he finally relented and put his stuff in the basket. It was a busy day in a major city and there was quite a line of people, now trying to figure out what kind of nonsense was holding up the line.
In the courtroom Gabe stood before the judge hugging his big black dog tightly. That dog had been given to him the Christmas after his father had died. He took it with him everywhere possible. We had let him bring it in with him to help comfort him. Now he stood there clinging to the dog, a frightened worried little boy, looking up at a judge behind a big desk. First the judge called Gabe's sister. Then he talked to Gabe. Gabe listened quietly as the judge asked him if he wanted to live with us. One quiet little yes. Inwardly I signed with relief. No accusations that we were stealing him or his stuff.
We signed the necessary papers, got in out truck and headed out of state towards home.

Sunday, July 17, 2011

Gabe's Story - part 3

Gabe and his mother had come to visit us at Christmas 2009. He seemed to be doing much better than the last time we saw him. His mother however, was miserable. She had pulled something in her back, she thought.
Only two weeks into January of 2010, Gabe's big sister, an adult with her own children, called in tears. "Mom's in the hospital and they have given her 2 weeks to live."  It was cancer again and it was so far spread that there was nothing that they could do.
My husband and daughter went down to stay at the apartment with Gabe and do what ever else they could to be helpful. I went down on the weekends. Exactly 2 weeks later she died. Gabe had gone to the hospital almost every evening after school and sat there in his mother's room. He had been trying to listen to all that was being said and was confused and worried. When she passed away, I took the allowable 4 days off work to go to KY.
When my husband told Gabe that his mother had died, he just cried and cried. (very expected). Then he got mad and began to demand to go to the hospital. The apartment at that time was full of relatives. Gabe continued to demand to go to the hospital, threatening to arrest any one who would not take him. He was very sad and very angry. He knew that if someone would just take him to the hospital, he could surely find his mother.
There had been previous discussion about making sure that he saw his mother after she died, but she had slept so much in the last days that she did not appear at all different after she passed. The relative that had made the biggest deal about Gabe seeing his mother was the relative that was with her when she slipped into eternity. She decided that it would not make a difference. Gabe was staying with a friend that night and went off to school not knowing what had happened. Gabe's mother had planned to be cremated and so there was no viewing.

Thursday, July 14, 2011

Gabe's Story - part 2

When people tried to talk with Gabe, he would either try to avoid them, or he would often shout lines from movies and stories at them. It became clear that he did not understand the meanings of phrases and words. When we were visiting he would often hit my daughter or grab items from others. His parents set up a short list of rules for him. He memorized these rules.Then he would run and hit my daughter or another child and then shout "Don't hit!" Sometimes he said, "you know the rules, don't hit". It soon became obvious that he thought that those were the words you say when you do those things. He did not understand that you don't hit others. In fact the hitting and shouting seemed to be a game that he enjoyed. The other children's reactions and the instructions from near by adults meant nothing to him. Sitting him down brought on lots of crying, but still he did not listen. When adults tried to talk and explain he made lots of noise and shut them out. His frustrated mother said, " he knows all of the rules, but just shouts them at people and then breaks them all! I'm trying, but what do I do?"
Another issue was that Gabe did not seem to understand the meaning of you and me or I as well as mine and yours. Anything that he saw that he wanted very quickly was declared "MINE!".
To complicate things, Gabe's (adoptive) Mother found out that she had cancer about a year after he joined their family. She recovered after surgery and chemotherapy. She was often tired but continuously tried to help Gabe understand the world around him.
As Gabe's mother grew stronger his (adoptive) father began to have more health issues. There were trips to the hospital at all hours. It was hard to be on a schedule. During this time it seemed that Gabe became even more challenging to deal with. His father died just after he turned 5.
Gabe's mother struggled to pay the bills and keep the house. About a year after the death of her husband she discovered a sore on her foot that was not healing. It was determined to be cancer and was removed by surgery. Still it did not heal. During this time the bank forclosed on the house and they had to move. Six months after the first surgery she had a second one. the doctor said that they got all of the cancer. He was sure that it had not gone to the bone.
Even though the loss of the house was not what she wanted, Gabe's mother used the move to his advantage. Gabe had become increasingly more addicted to movies.At church or other outings he would cry continuously and say, "I'm sick, I have to go home and go downstairs." The TV was downstairs. He would make the outing so miserable that she would give in and go home. I do not know if he went downstairs or to bed. When they moved, certain items did not go and some habits were broken. She used the simple logic of "we can't do that here." It seemed that Gabe had many compulsive behaviors that could be very annoying and distracting. These behaviors significantly slowed down accomplishing anything that involved him or even cleaning house.
Potty training was also very difficult. Gabe's mother had given up on it during his fathers illness. Now more than a year later they had made some progress, but more was needed. He was still in pull up pants in the daytime. During this time another relative from Tenn died. It was decided that Gabe would not know about the death. he would just be told that his mother and Uncle had to go on a trip. They would be back in 4 days. At this point in time Gabe was wearing 'big boy under ware' but still having many accidents. I quickly realized that he was too busy watching his movie to go to the bathroom. I told him that if he peed or pooped in the living room that there would be no more movies for the rest of the day. Those were long days. He was used to movie after movie, but he blew it during the first one the first 3 days at my house. He made it to the second movie on day 4 before we were cleaning up and changing clothes.
The reason that Gabe was not told about the relatives death was that he had begun to obsess over the death of his father. He would tell every one, even total strangers in the store that his daddy had died. He would do this with such emotion that people felt sorry for him and thought that it must have just happened. He became quite the little actor, turning on the 'sympathy machine' at the drop of a hat. It had started of course because he was greiving and did not understand what had happened to his Dad. But it really seemed to turn into an attention getting act, that was hard to stop. Because it was all in public his mother was hard pressed to know what to do. If she said anything she appeared hard hearted and cold.
About a year later Gabe and his mother moved out of state to KY. Once again additional items did not go with them and she also insisted on certain behaviors being left behind also. At this point she was able to get the 'sympathy machine' toned way down and eventually stopped. She found other doctors and therapists in her new town who seemed to be more helpful.
Each time that we saw Gabe over the next few years, we could see noticeable improvement in his behavior. However, certain compulsive actions and phrases hung on. He had an unquenchable need to vacuum. He would walk into any ones house and loudly (and embarrassingly ) declare, "this place is a mess. We need to vacuum!" During one visit to my home he was so obnoxious about it that it was nearly impossible to visit. He was sent to a chair in the kitchen and instructed to sit quietly. He cried and cried. He was repeatedly told that he needed to stop crying and get quiet to get off of the chair. He was left there 'by himself' and eventually stopped crying. When he was allowed off of the chair he walked back into the living room and demanded to vacuum. He was told that he was not to mention the vacuum again, but he remained persistent. He was soon back on the chair crying his eyes out. 
A little more than 2 1/2 years after they moved to Kentucky, cancer struck Gabe's mother again.

Wednesday, July 13, 2011

Gabe's Story - Living with Autism and Delays

This first post will just be a brief introduction to Gabe.
Gabe was born to parents who were heavily involved with alcohol and drugs. He was removed from those parents before he was a year old. At that time he was placed in foster care. About a year later he was placed with an adoptive family.
That is when I first met Gabe. He was nearly 2 years old and did not walk or talk. His adoptive parents enrolled him in various therapies such as occupational and physical therapy. In time he learned to walk. Language was much more difficult. He struggled to talk. Slowly he built vocabulary, but his annunciation was so poor that it was hard to understand him.
Gabe did not have much interest in playing with toys. However, he quickly learned the word MINE and would scream it at anybody who attempted to touch one of his toys. Attempts to play with him with his toys resulted in melt downs.
It quickly became obvious that  Gabe liked  videos.  His parents got  him several  videos that were appropriate for  little ones his age. It  was amazing to see how quickly  he memorized those videos. It seemed as if the videos were helping him learn to talk. However, communicating with him was still nearly impossible.