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.