I got another insight tonight. Background: Boo was very hard to potty train! In fact, I was concerned that it might not happen in time for him to begin school last fall. He still refuses to even attempt bowel movements in the toilet. And although he does urinate in the toilet, he doesn't like it. He holds it for amazingly long periods of time, to the point that it concerns us. He also has an extreme terror of public bathrooms. We have discovered that at some times, on good days, we can convince him to go inside a public bathroom and "potty in a cup." Any cup will do, as long as he isn't asked to use the public toilet. I have noticed that the toilet seats that are split in front, not complete rings, bother him the most. In fact, one look at them will usually cause an instant screaming fit. He also has expressed some anxiety about loud flushes.
This brings me to another of Boo's sensory issues. Loud noise. He has a love/hate relationship with loud noise. Some times he loves it, seeks it, creates it. Sometimes it really seems to bother him. He seems to have trouble filtering the relevant sounds out of the background noise, especially in very noisy places like public crowds. He will seem to not even hear me at all, no matter how loudly I call to him. This coupled with his refusal to hold hands (another sensory issue) has caused some difficult moments, to say the least. When he was little, he loved his jack-in-the-box, but he was afraid of the moment that it "popped." He would run out of the room as far away as he could when it was about to pop out of the box. After it was up, he would happily return. He has always hated the vacuum cleaner, usually running to his room and closing the door when I vacuum the carpet. When he plays games on the computer he will sometimes run around the corner to the next room when he encounters a very noisy part of a game. But he will return to play the same game again and again, running away for the noisy part each time.
Today we barely got Boo into a public bathroom at the zoo. He did not like being in there at all. He barely consented to stay in the stall long enough for me to use it. I knew he hadn't gone to the bathroom in several hours and didn't want him to keep holding it much longer. I didn't have a cup with me today, so I offered him one of our water bottles. He agreed to that, and suddenly pulled his pants down in such a way that I knew he was really feeling the need! He used the bottle happily and we got back on our way to the animal exhibits.
We spent quite a bit more time at the zoo after that, then went to McDonald's for lunch, and then Boo fell asleep on the way home. He ended up sleeping about five hours! Holy cow! Even after he woke, he didn't go, didn't go, didn't go. Finally, after it had been around 8 hours since our trip to the bathroom at the zoo, I insisted he go. This began an epic fit. He flat refused, said he didn't need to go, he didn't want to go, screamed, cried, begged. I kept asking him "why" and he could only answer that he didn't want to, or didn't need to. I ended up sitting on the bathroom floor with Boo in my lap, squeezing him in a tight hug and rocking side to side. It dawned on me to ask "what would happen if you did potty?" His answer? "It would be too loud!" Heaven's sake! I had no idea that he was bothered by the sound of using the toilet! I offered him a cup, something that we have never done at home, and he happily filled it, then went on to the next activity. Go figure.
Thursday, March 24, 2011
Wednesday, March 23, 2011
Here's the Story
Once in a while Boo has a bout with insomnia. I have never been certain what triggered it, but when it happens he wakes in the middle of the night confused and restless and can't seem to get back to sleep and can't express himself. Recently he had such a night but was unusually communicative. He woke me up by asking "Mommy, are there no monsters on the earth?" I assured him there weren't, but we were up for the next 2 hours. Several times in the day he asked me the same question again. Finally, he began to talk about the monster. He said it was a big monster that ate all the energy and make the lights not work. I recognized this as coming from an episode of the PBS Kids show Word Girl. I tried to reassure him that the monster on the tv is just pretend.
Enter the autistic brain! They think sooooo differently, and that is often a wonderful asset but frequently a difficulty also. I never previously realized how he understands the term "pretend." You see, when we tell him to pretend, or comment on his pretending, it usually involves him imagining the existence of things not seen, or imagining that one thing is actually another thing. For example, pretending his best friend is here and talking to him or pretending that his hand is a mouse. But things that are seen are NOT pretend, they are real. By Boo's definition, visible equals real. Thus, the monster on Word Girl is NOT pretend, it's REAL. There is no dissuading him in this certainty. I tucked that one in my Mommy processor, knowing we would come back to it again.
Today we had a long and wonderful day at the zoo. He was much more tired than he has been in a long while. He slept in the car on the way home, then I carried him to bed when we got home. He slept about another hour, then came out of his room in another stupor, seeming confused as to why he was up, distressed, and unable to articulate what the matter was. He laid down on the couch and fell back to sleep. He slept a long time, and when he awoke, we were talking and reviewing our day. I got out the zoo map to look at. Boo LOVES maps! We reviewed all the things we had seen and done at the zoo, talked about where we had gone after, and that he had come home and slept afterward. Then he gave me some incredible insight!
He began telling me about the "story" that he saw. He said that he was in a story and that when he opened his eyes, the story went away. AHA! I sat with him and began asking questions. I learned that he was in the story and that there were two things that were scary in the story. He said he couldn't remember what the scary stuff was. I asked him what else was in the story and he said there was a monster and a bug. I asked what they were doing and he said that the bug was scared of the monster. He then told me that I was in the story also. I asked him what did I do in the story and he said that I made him scared of the monster and the bug. I asked him if I kept him safe and he said no. He said that he couldn't remember anything else from the story.
So, we had a chat and I told him that sometimes when we sleep, our mind tells us stories and these stories are called dreams. Usually we have good dreams, but sometimes something scary happens and we call that a bad dream. I told him that when he wakes up from a bad dream if he still feels scared he can come to Mommy and tell me "I had a bad dream." He then told me that we don't have any bad dreams, only good ones. We talked about it just a little bit more, and then he wanted to watch a movie. I will be discussing the matter again in the future, namely bed times. I feel very encouraged. Boo's ability to articulate and my ability to listen and think through things his way are both improving and it's giving us much better insight into his mind. It must be tough at times to live in that brain. The more I learn about my sweet boy, the more he amazes me and inspires me. This little bundle of sweetness is one of the smartest and bravest people I know. I work hard every day to be the mom he deserves. I sit now in tears and in awe of the gift God has given me. This little man has the power and potential to impact this world greatly. I pray that God gives me the wisdom to help guide my son to be the best he can be.
Enter the autistic brain! They think sooooo differently, and that is often a wonderful asset but frequently a difficulty also. I never previously realized how he understands the term "pretend." You see, when we tell him to pretend, or comment on his pretending, it usually involves him imagining the existence of things not seen, or imagining that one thing is actually another thing. For example, pretending his best friend is here and talking to him or pretending that his hand is a mouse. But things that are seen are NOT pretend, they are real. By Boo's definition, visible equals real. Thus, the monster on Word Girl is NOT pretend, it's REAL. There is no dissuading him in this certainty. I tucked that one in my Mommy processor, knowing we would come back to it again.
Today we had a long and wonderful day at the zoo. He was much more tired than he has been in a long while. He slept in the car on the way home, then I carried him to bed when we got home. He slept about another hour, then came out of his room in another stupor, seeming confused as to why he was up, distressed, and unable to articulate what the matter was. He laid down on the couch and fell back to sleep. He slept a long time, and when he awoke, we were talking and reviewing our day. I got out the zoo map to look at. Boo LOVES maps! We reviewed all the things we had seen and done at the zoo, talked about where we had gone after, and that he had come home and slept afterward. Then he gave me some incredible insight!
He began telling me about the "story" that he saw. He said that he was in a story and that when he opened his eyes, the story went away. AHA! I sat with him and began asking questions. I learned that he was in the story and that there were two things that were scary in the story. He said he couldn't remember what the scary stuff was. I asked him what else was in the story and he said there was a monster and a bug. I asked what they were doing and he said that the bug was scared of the monster. He then told me that I was in the story also. I asked him what did I do in the story and he said that I made him scared of the monster and the bug. I asked him if I kept him safe and he said no. He said that he couldn't remember anything else from the story.
So, we had a chat and I told him that sometimes when we sleep, our mind tells us stories and these stories are called dreams. Usually we have good dreams, but sometimes something scary happens and we call that a bad dream. I told him that when he wakes up from a bad dream if he still feels scared he can come to Mommy and tell me "I had a bad dream." He then told me that we don't have any bad dreams, only good ones. We talked about it just a little bit more, and then he wanted to watch a movie. I will be discussing the matter again in the future, namely bed times. I feel very encouraged. Boo's ability to articulate and my ability to listen and think through things his way are both improving and it's giving us much better insight into his mind. It must be tough at times to live in that brain. The more I learn about my sweet boy, the more he amazes me and inspires me. This little bundle of sweetness is one of the smartest and bravest people I know. I work hard every day to be the mom he deserves. I sit now in tears and in awe of the gift God has given me. This little man has the power and potential to impact this world greatly. I pray that God gives me the wisdom to help guide my son to be the best he can be.
Thursday, March 10, 2011
We Interrupt This Regularly Scheduled Wednesday...
Yesterday was Ash Wednesday, one of my favorite days of the year. Work was slow enough that I was able to leave in time to take Boo to the special church supper and Ash Wednesday service. As excited as I was to be able to go, I did have concerns about just how Boo would handle it. As is the case with most kids with ASD, he has a very hard time with unexpected changes in routine. In Boo's memory we've never gone to church in the evening before. I wasn't sure how he would take this since we would be going to supper at church where there was likely to be nothing he would eat, then going to an unusual church service which was not preceded by Sunday School. He handled the supper quite well. He was uncomfortable at first, but once he discovered the saltine crackers he sat down at the table with me and ate. I had the most delicious chicken soup, a ham sandwich and a yummy dessert. He ate saltine crackers. That was it. He wouldn't even touch his applesauce.
He was a little jittery and reluctant to go to the sanctuary at first, but acquiesced once I agreed to carry him. We went in and set our things down and he was playing with his toy cars. All was well at first, until he realized that we had not been to "the eating place." Our church has a special fellowship time between Sunday School and church service where they serve refreshments and give everyone time to gather and conversate. Boo has dubbed this "the eating place" and it is probably his favorite part of the Sunday morning routine. I told him that they don't have eating place on Wednesdays, they had supper instead. He was not satisfied by this explanation and things began to go downhill. When it was time for the imposition of ashes (congregants come forward and Pastor places ashes on their foreheads in the sign of the cross) Boo requested to stay in the pew while I went forward. I had my reservations but he handled it just fine. But when I returned to my seat it didn't take long for him to become very agitated about that "stuff" on my head! He hated it! He kept begging me to clean it off and asking what it was. I couldn't come up with an explanation that would satisfy him. I pulled out my emergency reserve: Reece's Pieces. He settled down just long enough to eat the small amount I had packed for him, and then he began testing my limits. He was trying to play in the aisles, and being generally argumentative and was in constant motion: climbing, kicking, flailing, you name it. He also would NOT stop talking and would NOT speak quietly! I was at my wit's end and sat there silently praying that SOME DAY I will once again be able to actually hear a sermon.
In the midst of this mess, a miracle happened! Ok, "miracle" might be an over-dramatization, but it felt like almost that big of a thing for us. Right in the middle of the service, Boo announced "Mommy, I have to go potty!" I said "let's go!" and we left the sanctuary. I took him into the ladies room, fully expecting a battle. You see, Boo has an abject fear of public bathrooms. He refuses to use them. Especially when they have seats that are split in the front instead of being a full circle. Normally, if he takes one look at such a toilet he runs away screaming. The best we are able to do usually is give him a disposable cup that he can potty in, but I had no such thing with me at the time. I offered to let him stand up to potty and he said ok. But once he pulled his pants down he shocked me by sitting right up on that public toilet as if it had never even been an issue! It was all I could do to keep my cool and act nonchalant. Then he leaned backward just so, and accidentally pottied on his pants a little bit. I quickly reminded him to watch where his potty was going and he did. Then I was really worried! Normally the tiniest bit of wetness on an article of clothing requires that we must change. I hadn't brought his bag into the bathroom with me. I was picturing him throwing a huge fit about putting his pants on. I pictured having to haul him naked back to the sanctuary to retrieve spare pants. EEEK! But he surprised me again by not even seeming to notice the slight wetness on his pants. I was more elated than I can find words to describe.
We returned to church and Boo continued his antics, but nothing could deflate my joy at the miracle that took place in the church bathroom! After church was over we had another big meltdown because he wanted to go to Grandpa's house, as we are in the habit of doing after Sunday services, and I told him that it was just too late. So while the evening was a little tough on him, Boo excelled overall with the experience of an unexpected change in routine and an unfamiliar situation. I couldn't ask for more!
He was a little jittery and reluctant to go to the sanctuary at first, but acquiesced once I agreed to carry him. We went in and set our things down and he was playing with his toy cars. All was well at first, until he realized that we had not been to "the eating place." Our church has a special fellowship time between Sunday School and church service where they serve refreshments and give everyone time to gather and conversate. Boo has dubbed this "the eating place" and it is probably his favorite part of the Sunday morning routine. I told him that they don't have eating place on Wednesdays, they had supper instead. He was not satisfied by this explanation and things began to go downhill. When it was time for the imposition of ashes (congregants come forward and Pastor places ashes on their foreheads in the sign of the cross) Boo requested to stay in the pew while I went forward. I had my reservations but he handled it just fine. But when I returned to my seat it didn't take long for him to become very agitated about that "stuff" on my head! He hated it! He kept begging me to clean it off and asking what it was. I couldn't come up with an explanation that would satisfy him. I pulled out my emergency reserve: Reece's Pieces. He settled down just long enough to eat the small amount I had packed for him, and then he began testing my limits. He was trying to play in the aisles, and being generally argumentative and was in constant motion: climbing, kicking, flailing, you name it. He also would NOT stop talking and would NOT speak quietly! I was at my wit's end and sat there silently praying that SOME DAY I will once again be able to actually hear a sermon.
In the midst of this mess, a miracle happened! Ok, "miracle" might be an over-dramatization, but it felt like almost that big of a thing for us. Right in the middle of the service, Boo announced "Mommy, I have to go potty!" I said "let's go!" and we left the sanctuary. I took him into the ladies room, fully expecting a battle. You see, Boo has an abject fear of public bathrooms. He refuses to use them. Especially when they have seats that are split in the front instead of being a full circle. Normally, if he takes one look at such a toilet he runs away screaming. The best we are able to do usually is give him a disposable cup that he can potty in, but I had no such thing with me at the time. I offered to let him stand up to potty and he said ok. But once he pulled his pants down he shocked me by sitting right up on that public toilet as if it had never even been an issue! It was all I could do to keep my cool and act nonchalant. Then he leaned backward just so, and accidentally pottied on his pants a little bit. I quickly reminded him to watch where his potty was going and he did. Then I was really worried! Normally the tiniest bit of wetness on an article of clothing requires that we must change. I hadn't brought his bag into the bathroom with me. I was picturing him throwing a huge fit about putting his pants on. I pictured having to haul him naked back to the sanctuary to retrieve spare pants. EEEK! But he surprised me again by not even seeming to notice the slight wetness on his pants. I was more elated than I can find words to describe.
We returned to church and Boo continued his antics, but nothing could deflate my joy at the miracle that took place in the church bathroom! After church was over we had another big meltdown because he wanted to go to Grandpa's house, as we are in the habit of doing after Sunday services, and I told him that it was just too late. So while the evening was a little tough on him, Boo excelled overall with the experience of an unexpected change in routine and an unfamiliar situation. I couldn't ask for more!
Saturday, February 19, 2011
The Good, the Bad, and the Ridiculous
This morning was a pretty good one for Boo and I. The first day in a long while that we didn't have to wake up by a certain time to get going somewhere. We stayed in our pajamas till 10am. We were low key and fun. I hated having to take him to Mammo's house. He transitioned well and had a great day with his Mammo. They even went to McDonald's for a dinner of "chicken and fries." On the way home he requested to stop and visit one of his great grandmas. They had a pleasant visit and he enjoyed playing with her little dog.
Meanwhile, back at the convenience store, I was having a day from......well, a bad day. We were insanely busy and I had an encounter with a customer who was screaming like a lunatic and cussing me out all because her husband couldn't figure out how to operate a gas pump. It was all I could do to keep my cool. All night I just wanted to get home to my sweet Boo. It was a terrible work day.
Finally 10 o'clock arrived and so did the third shift replacement. I made a hasty exit and headed home. I found my Boo playing and laughing and having fun. Mom gave me the day's report and said her goodbyes. Shortly thereafter my sweet little man melted down into a screaming crying wailing kicking sobbing fit throwing mass of sadness. It all started when he asked to play PBS Kids on the computer and I told him that it was too late. Then he wanted to watch a movie and got the same response. He just could not let go of the idea. He tried every trick in the book. Begging, pleading, crying, bargaining, and all the rest. I tried to move on to putting on pajamas and met even more resistance. He entered full on tantrum mode. He refused to wear pajamas, and threw a gigantic fit. It was all I could do not to react in kind. My reaction was to yell, punish, threaten. But I know well from much experience that those things only serve to ratchet up the intensity of a fit in progress. Only calm and composure together with time can quiet the storm. Several time outs later we finally managed to get his pajamas on and he aquiesced to the idea of going to bed. But he insisted on sleeping in "the big bed." (in other words, Mommy's bed) This is not a habit I wish to start. Instead of the sweet cuddle time we usually share at night, this was a tense and unhappy bedtime with an unhappy boy. Once he settled I told him "I love you" and he replied "no you don't."
He is finally sound asleep and I will be soon too. Some days it just doesn't pay to leave the house.
Meanwhile, back at the convenience store, I was having a day from......well, a bad day. We were insanely busy and I had an encounter with a customer who was screaming like a lunatic and cussing me out all because her husband couldn't figure out how to operate a gas pump. It was all I could do to keep my cool. All night I just wanted to get home to my sweet Boo. It was a terrible work day.
Finally 10 o'clock arrived and so did the third shift replacement. I made a hasty exit and headed home. I found my Boo playing and laughing and having fun. Mom gave me the day's report and said her goodbyes. Shortly thereafter my sweet little man melted down into a screaming crying wailing kicking sobbing fit throwing mass of sadness. It all started when he asked to play PBS Kids on the computer and I told him that it was too late. Then he wanted to watch a movie and got the same response. He just could not let go of the idea. He tried every trick in the book. Begging, pleading, crying, bargaining, and all the rest. I tried to move on to putting on pajamas and met even more resistance. He entered full on tantrum mode. He refused to wear pajamas, and threw a gigantic fit. It was all I could do not to react in kind. My reaction was to yell, punish, threaten. But I know well from much experience that those things only serve to ratchet up the intensity of a fit in progress. Only calm and composure together with time can quiet the storm. Several time outs later we finally managed to get his pajamas on and he aquiesced to the idea of going to bed. But he insisted on sleeping in "the big bed." (in other words, Mommy's bed) This is not a habit I wish to start. Instead of the sweet cuddle time we usually share at night, this was a tense and unhappy bedtime with an unhappy boy. Once he settled I told him "I love you" and he replied "no you don't."
He is finally sound asleep and I will be soon too. Some days it just doesn't pay to leave the house.
Sunday, February 13, 2011
Charitable Giving
This morning at church Boo decided he would like to help out with the offering. Typically in our church the elders pass the collection plates through the congregation while a soloist sings or plays a song. When they have finished, two elders stand at the back of the santuary till the solo is over, then they and two of the Sunday School children carry the offering plates to the front and give them to Pastor, who then places them on the alter and the elders and children return to their seats. The Sunday School teacher had told me that Boo had expressed his desire to help today. It helped that my dad was one of the elders who was carrying the offering today too. So when they stood at the back of the church, I asked Boo if he still wanted to help.
Before the offering began, Boo had taken one of the communion cards and a small pencil from the pew and was writing on the card. He had told me "I'm writing a test." (This is from his Franklin video, when Franklin and his friends have an important spelling test. Instead of saying they "take" a test, they say they are "writing" a test.) As his Grandpa encouraged him, he sheepishly left the pew and approached Grandpa, the other elder, and Susan (a middle school aged girl from Sunday School, whose name I changed for privacy). As Grandpa prompted Boo to hold one of the collection plates, he was still holding the pencil and the "test" so he simply dropped them into the plate before taking hold of it. Grandpa then explained that Boo was to follow him to the front of the church where they would give the plates to Pastor. I watched this exchange with teary-eyed expectation and joy. Watching my son learning to serve God, even in this small way, touched my heart.
When the solo ended, Grandpa and the others headed up the aisle and Boo trailed behind, making his own pace. About halfway up the sanctuary he took a sudden burst of speed, eliciting quiet giggle from the congregation. Arriving at the front, he watched Susan place her plate in the stack with the others, then he placed his plate in the stack as well. At that's when it all went south. Before he had the change to snatch his precious "pencil and test" back from the plate it was whisked away and he protested as he watched the elder hand it over to Pastor and Pastor carry it to the alter. Grandpa gently turned him back toward the sanctuary and my heart broke as I watched his sweet little face crinkle up with heartbroken tears. He walked dejectedly back to the pew where he fell into my arms and began to sob loudly and inconsolably. "I want my things back! I want them BAAAACK! But I NEEEEEED them!" On and on and on he cried, no matter what I tried to say to comfort him. He would have no part of a new card and a new pencil. He needed THOOOOOSE ones. Everyone was taken aback. The rest of the congregation had not seen what took place at the back of the church and they thought he was demanding the money back from the plates. I was certain that no one could even hear the prayer that Pastor was saying.
I finally took my heartbroken boy out of the sanctuary and out to the foyer to try to calm him down. After he found the words to talk about what had happened he began to settle. By the time he was feeling well enough to return, everyone was leaving. Church was over. We weaved our way back inside like salmon swimming upstream so that we could go back and get out belongings from the pew. Just as we ducked inside the sanctuary, I looked up to see dear sweet Susan approaching with a big smile.......holding out the cherished pencil and test for Boo. He was elated! He was so thankful, and he told me with great surprise "He gave me my sings back!" (Boo always confuses gender pronouns) It was then that some of the people around us came to understand just what he had gotten so upset about. Several different church members praised him on a job well done, exchanging high fives and "knuckles" (fist bumps).
If I had searched high and low, near and far, I don't think I could have found a more perfect church home for me and my Boo. These warm and wonderful friends never miss a chance to put an arm around my shoulder, offer assistance, provide encouragement, celebrate improvement, and just generally make us feel welcome and loved and valued. I haven't even shared the news of his diagnosis except with a couple people. Even so, from day one they seem to have intuited our needs and endeavored to meet them. I love my church. I love my God. I am so thankful that the boy I love is learning to love them too.
Before the offering began, Boo had taken one of the communion cards and a small pencil from the pew and was writing on the card. He had told me "I'm writing a test." (This is from his Franklin video, when Franklin and his friends have an important spelling test. Instead of saying they "take" a test, they say they are "writing" a test.) As his Grandpa encouraged him, he sheepishly left the pew and approached Grandpa, the other elder, and Susan (a middle school aged girl from Sunday School, whose name I changed for privacy). As Grandpa prompted Boo to hold one of the collection plates, he was still holding the pencil and the "test" so he simply dropped them into the plate before taking hold of it. Grandpa then explained that Boo was to follow him to the front of the church where they would give the plates to Pastor. I watched this exchange with teary-eyed expectation and joy. Watching my son learning to serve God, even in this small way, touched my heart.
When the solo ended, Grandpa and the others headed up the aisle and Boo trailed behind, making his own pace. About halfway up the sanctuary he took a sudden burst of speed, eliciting quiet giggle from the congregation. Arriving at the front, he watched Susan place her plate in the stack with the others, then he placed his plate in the stack as well. At that's when it all went south. Before he had the change to snatch his precious "pencil and test" back from the plate it was whisked away and he protested as he watched the elder hand it over to Pastor and Pastor carry it to the alter. Grandpa gently turned him back toward the sanctuary and my heart broke as I watched his sweet little face crinkle up with heartbroken tears. He walked dejectedly back to the pew where he fell into my arms and began to sob loudly and inconsolably. "I want my things back! I want them BAAAACK! But I NEEEEEED them!" On and on and on he cried, no matter what I tried to say to comfort him. He would have no part of a new card and a new pencil. He needed THOOOOOSE ones. Everyone was taken aback. The rest of the congregation had not seen what took place at the back of the church and they thought he was demanding the money back from the plates. I was certain that no one could even hear the prayer that Pastor was saying.
I finally took my heartbroken boy out of the sanctuary and out to the foyer to try to calm him down. After he found the words to talk about what had happened he began to settle. By the time he was feeling well enough to return, everyone was leaving. Church was over. We weaved our way back inside like salmon swimming upstream so that we could go back and get out belongings from the pew. Just as we ducked inside the sanctuary, I looked up to see dear sweet Susan approaching with a big smile.......holding out the cherished pencil and test for Boo. He was elated! He was so thankful, and he told me with great surprise "He gave me my sings back!" (Boo always confuses gender pronouns) It was then that some of the people around us came to understand just what he had gotten so upset about. Several different church members praised him on a job well done, exchanging high fives and "knuckles" (fist bumps).
If I had searched high and low, near and far, I don't think I could have found a more perfect church home for me and my Boo. These warm and wonderful friends never miss a chance to put an arm around my shoulder, offer assistance, provide encouragement, celebrate improvement, and just generally make us feel welcome and loved and valued. I haven't even shared the news of his diagnosis except with a couple people. Even so, from day one they seem to have intuited our needs and endeavored to meet them. I love my church. I love my God. I am so thankful that the boy I love is learning to love them too.
Friday, February 11, 2011
Thinking Like an Autist
I have been the Mom-NOS blog almost obsessively lately. It is so insightful and amazing. I am especially in awe of the way she is able to explain her sons echolalic speech and figure out what he actually means when he is "scripting." She is really able to climb inside her son's mind and see things from his perspective. I am focused on learning how to do this for Boo. Boo's impairments are vastly different from Mom-NOS's son Bud, but I am often struck by the similarities in the way they seem to think.
I have been pondering some things that seem to challenge Boo. Sometimes it is SO HARD to figure out what behaviors are based in simple defiance and what behaviors are born from a genuine inability to understand what is expected of him, or a genuine inability to comply. For example, whenever we go out the door to get in the car and go somewhere, Boo seems completely unable to walk directly to the car. He must take a long, meandering, circuitous route that frustrates the daylights out of me. He has always reviled the idea of holding hands while walking and trying to get him to do so only ends up in a battle of wills with a screaming, pulling, crying child. He also hates for me to put my hand on his shoulders to direct him. I try to remember to always talk to him about it immediately before opening the door to go out. "Boo, we are going to go out the door and walk straight to the car. We are not going to walk through the grass (or snow, or parking lot, or whatever the case may be). "Stay with Mommy" is completely ineffective, as is "stay on the path." This plays out at home, at Mammo's house, and at school on a regular basis. In the past I have treated this like a simple behavioral issue, using discipline and positive reinforcement to try to achieve the desired behavior. But more recently, I starting to think that this is not where the problem lies.
At school, when it is time for dismissal the teacher leads the children outside and has them line up and stand up against the wall of the building. There is a large section of concrete in front of the building and then a gravel parking lot. The parents park directly in front of the concrete and the children are dismissed one at a time by the teacher as she sees that their parents have arrived. Usually I am among the first to arrive and park directly in front of where the children stand. When Boo is dismissed, he walked straight through the gravel to meet me beside the car. Now, it is important to interject here that one of Boo's most persistent issues is his strict adherence to routine and especially to routes. Once you go someplace one time, the route you took the first time is the route you must take for all of eternity or the earth will fall from its axis. Or so you would think judging by his reaction if you take what he deems to be a "wrong turn." When you enter a building you must leave through the same door you entered. Places where this is not allowed are especially difficult for us. Keeping this in mind, envision a recent day when I arrived at the school to find the parking lot full and had to park all the way on the south end of the gravel lot. On the south side of the large concrete area is a sidewalk leading over to the new addition to the building and incidentally, to my car that day. When Boo was dismissed he was told to walk on the sidewalk. He showed no sense of registering this instruction and took off at a quick pace toward me with an ear to ear grin, as he does each day. But instead of being allowed to run into my arms for a big happy hug, he was called back by the teacher. He completely ignored her and kept running for me. She followed after him and took him by the shoulders and returned him back to the starting point to make him do it as he was directed. She repeated the instructions that he must stay on the sidewalk. Looking confused, he said ok and walked straight across the concrete into the gravel lot. She came and took hold of him again, turned him around and marched him to the start of the sidewalk and announced "we're going to get this right" in a rather gruff tone. When she turned him back toward me, I saw huge tears welling in his eyes and his chin quivering. As soon as she let go of him he walked slowly toward me, wailing the most heartbroken cry, tears streaming down his cheeks. I picked him up and he cried out "I don't LIKE school!" I tried to comfort him and he continued to cry in the car as we drove toward Mammo's house. Now I know my son. He is very capable of turning the tears on and off when it suits his purpose, as most children are. But these were not crocodile tears. I really think he genuinely did not understand what was going on and why.
Similarly, when we leave my mom's house to go home, he insists on walking across the driveway to visit the Christmas tree decoration and Santa, then walk on the concrete blocks, then meander around the circle drive and make his way back toward the vehicle. I know this doesn't sound like much of a big deal, but often I pick him up quite late after work and the temperatures are frigid and the wind is howling, and the driveway is snowy or muddy, and well....I just need him to go straight to the car! But the maddening thing is that when I get onto him and tell him to walk straight to the car now, he insists with great intensity that "I AM." What's a mom to do with this? Does he really just not understand the directions? Does he not know what the concept of "straight to" means?
So I am thinking up ways to work with him on the concept of going "straight to" something. I will disguise it as a game, and I am thinking I will be using his love of making footprints to make it fun for him. It's still in the works in my head, but I hope it will end up being helpful. I can't stand broken hearted tears!
I have been pondering some things that seem to challenge Boo. Sometimes it is SO HARD to figure out what behaviors are based in simple defiance and what behaviors are born from a genuine inability to understand what is expected of him, or a genuine inability to comply. For example, whenever we go out the door to get in the car and go somewhere, Boo seems completely unable to walk directly to the car. He must take a long, meandering, circuitous route that frustrates the daylights out of me. He has always reviled the idea of holding hands while walking and trying to get him to do so only ends up in a battle of wills with a screaming, pulling, crying child. He also hates for me to put my hand on his shoulders to direct him. I try to remember to always talk to him about it immediately before opening the door to go out. "Boo, we are going to go out the door and walk straight to the car. We are not going to walk through the grass (or snow, or parking lot, or whatever the case may be). "Stay with Mommy" is completely ineffective, as is "stay on the path." This plays out at home, at Mammo's house, and at school on a regular basis. In the past I have treated this like a simple behavioral issue, using discipline and positive reinforcement to try to achieve the desired behavior. But more recently, I starting to think that this is not where the problem lies.
At school, when it is time for dismissal the teacher leads the children outside and has them line up and stand up against the wall of the building. There is a large section of concrete in front of the building and then a gravel parking lot. The parents park directly in front of the concrete and the children are dismissed one at a time by the teacher as she sees that their parents have arrived. Usually I am among the first to arrive and park directly in front of where the children stand. When Boo is dismissed, he walked straight through the gravel to meet me beside the car. Now, it is important to interject here that one of Boo's most persistent issues is his strict adherence to routine and especially to routes. Once you go someplace one time, the route you took the first time is the route you must take for all of eternity or the earth will fall from its axis. Or so you would think judging by his reaction if you take what he deems to be a "wrong turn." When you enter a building you must leave through the same door you entered. Places where this is not allowed are especially difficult for us. Keeping this in mind, envision a recent day when I arrived at the school to find the parking lot full and had to park all the way on the south end of the gravel lot. On the south side of the large concrete area is a sidewalk leading over to the new addition to the building and incidentally, to my car that day. When Boo was dismissed he was told to walk on the sidewalk. He showed no sense of registering this instruction and took off at a quick pace toward me with an ear to ear grin, as he does each day. But instead of being allowed to run into my arms for a big happy hug, he was called back by the teacher. He completely ignored her and kept running for me. She followed after him and took him by the shoulders and returned him back to the starting point to make him do it as he was directed. She repeated the instructions that he must stay on the sidewalk. Looking confused, he said ok and walked straight across the concrete into the gravel lot. She came and took hold of him again, turned him around and marched him to the start of the sidewalk and announced "we're going to get this right" in a rather gruff tone. When she turned him back toward me, I saw huge tears welling in his eyes and his chin quivering. As soon as she let go of him he walked slowly toward me, wailing the most heartbroken cry, tears streaming down his cheeks. I picked him up and he cried out "I don't LIKE school!" I tried to comfort him and he continued to cry in the car as we drove toward Mammo's house. Now I know my son. He is very capable of turning the tears on and off when it suits his purpose, as most children are. But these were not crocodile tears. I really think he genuinely did not understand what was going on and why.
Similarly, when we leave my mom's house to go home, he insists on walking across the driveway to visit the Christmas tree decoration and Santa, then walk on the concrete blocks, then meander around the circle drive and make his way back toward the vehicle. I know this doesn't sound like much of a big deal, but often I pick him up quite late after work and the temperatures are frigid and the wind is howling, and the driveway is snowy or muddy, and well....I just need him to go straight to the car! But the maddening thing is that when I get onto him and tell him to walk straight to the car now, he insists with great intensity that "I AM." What's a mom to do with this? Does he really just not understand the directions? Does he not know what the concept of "straight to" means?
So I am thinking up ways to work with him on the concept of going "straight to" something. I will disguise it as a game, and I am thinking I will be using his love of making footprints to make it fun for him. It's still in the works in my head, but I hope it will end up being helpful. I can't stand broken hearted tears!
Thursday, February 10, 2011
Boo Speak
Boo speaks quite well. He speaks plainly and enunciates well. His syntax is usually as accurate as a typical child. He loves to talk and does so all day long. So I am in awe at how consistently I find myself "translating" him for others who aren't around him very often. It baffles me how people don't understand what he is getting at. I wonder if they are just dense or if I have become fluent in some esoteric language without realizing it. I can't explain it. Sometimes I wish that our days could be video taped so I could review and analyze them after the fact like a coach after a ball game.
There are a few unique turns of phrase that I can identify. They are quite witty in fact, and usually understandable as well as adorable. For instance, "can I wear my belly" means can I leave my shirt off. "Can I wear my legs" means can I leave my pants off. Coming home late at night, "can I lay in these" means I'm too tired to change into my pajamas, can I leave my clothes on? "Drizzling snow" means snow that is flying around in the air and blowing into his face and eyes. (which he hates)
Often times he seems to be carrying out a very intelligent and insightful conversation, but if you spend most of his days with him you realize that he is acting out one of the shows he watches on tv or video. He has a nack for memorizing large chunks of these shows including every last word of narration. Sometimes he will use concepts or parts of phrases or ideas from shows and connect them with reality. One of my favorite examples of this was when he injected the concept of a hypothesis from Dinosaur Train into a family holiday dinner by announcing at the table, "Grandpa's a boy, but that's just a hypothesis."
There are a few unique turns of phrase that I can identify. They are quite witty in fact, and usually understandable as well as adorable. For instance, "can I wear my belly" means can I leave my shirt off. "Can I wear my legs" means can I leave my pants off. Coming home late at night, "can I lay in these" means I'm too tired to change into my pajamas, can I leave my clothes on? "Drizzling snow" means snow that is flying around in the air and blowing into his face and eyes. (which he hates)
Often times he seems to be carrying out a very intelligent and insightful conversation, but if you spend most of his days with him you realize that he is acting out one of the shows he watches on tv or video. He has a nack for memorizing large chunks of these shows including every last word of narration. Sometimes he will use concepts or parts of phrases or ideas from shows and connect them with reality. One of my favorite examples of this was when he injected the concept of a hypothesis from Dinosaur Train into a family holiday dinner by announcing at the table, "Grandpa's a boy, but that's just a hypothesis."
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