I live with a child who is a stickler for the rules. This would be super great, if only it were MY rules he is so insistent on following. But the rules Boo must follow, and which he insists we ALL follow, originate in his own mind. They are often things that seem so random or arbitrary or illogical to the rest of us, but for Boo, they seem to be something he NEEDS in order to cope with the world and keep himself on an even keel. Regulated, as we sometimes call it. Some examples of Boo rules are, only one sound may be happening at a time. For example, if he is watching a movie, I can't have the radio on in the next room. Bananas must remain whole or they are inedible. If one breaks, or heaven forbid you cut it, he becomes very distressed and refuses to eat that one, or any others. Only one food may be offered/eaten at a time. The route we drive both to and from Mammo's house must be exactly the same each time. There are a myriad of such rules that we must pay attention to.
You can imagine how someone who insists on strict adherence to order and sameness can be challenging to live with. Sometimes life just throws you a curve ball, and there is nothing you can do but adjust how you hold your mitt. This is very hard to teach a child with autism. Recently, the county began working on resurfacing the highway between our house and Mammo's house. The appearance of orange cones and strange signs along the road was uncomfortable for Boo, and he needed me to talk it through a lot so that he could feel safe and comfortable. Then the cones moved to the middle of the road, and we were required to drive only on the left lane. That was very difficult to come to terms with, but he finally did. Low and behold, just a few days later, the right lane had been ground off and they began work on the left lane. Aside from this being highly annoying to ME since there is no way to drive down the highway without cars in front of you spraying rocks up on your windshield, it was very disturbing to Boo, who had only recently dealt with the idea that we were only driving on the left lane, and now we are only driving on the right. Not to mention, the westbound traffic has these rules, but the eastbound traffic does not. Boo does not like this construction zone, or it's cones, and especially not its strange and (to him) confusing rules. When he feels distressed, he shows it by talking about what's bothering him. A lot. Incessantly! So there has been a lot of talk about cones, and workers.
Today as we entered the highway, a large dump truck entered also, but it proceeded to drive down the forbidden side of the road toward the construction workers. This sent Boo into a tizzy! That truck was NOT supposed to be on THAT side of the road! It took me a while to convince him that the truck was driven by one of the workers and that it was ok. It was crazy windy here today, and several of the orange cones had been blown over onto their sides, pointing into our driving lane. This also upset the boy, as the perfect row of identical cones set up at regular intervals was disrupted by the occasional fallen cone. He asked me what happened and I told him the wind blew them over. He lamented, "But I didn't WANT that to happen!" Soon he spotted a workman up ahead and he concluded that the worker was going to pick up the cones, so it would be ok.
Then, something magical happened! We passed by a big machine that was grinding up the road and he asked me what it was. I told him "that's a paving machine." Now, in the strictest sense, I was not correct, since this machine was grinding off the old pavement, not laying down new. But it was the first thing that came to my mind. And oh, was Boo excited! He announced, "YEAH, JUST LIKE BESSIE!" (Bessie is the name of the paving machine in the movie Cars) He began asking me "what is the name of that machine? What is the name of the machine that's on the real earth? (meaning, the real one, as opposed to the one on tv) I told him I didn't know and asked what he supposed the name of the machine was, and he answered "Bessie." He was so excited about Bessie that he forgot all about his concerns over the construction zone. It's the little things, ya know?
Friday, April 29, 2011
Sunday, April 24, 2011
New Sandals
I am breathing a little easier these days. I am back down to only one job. Spring is in the air, bringing with it lots of chances to run and play outside. My flowers are blooming and the garden is ready to be planted. It's my favorite time of year!
We have been very busy lately too. Boo's Daddy was home unexpectedly for a weekend recently which thrilled Boo right down to his toes! We also went on a field trip to a local farm with Boo's preschool class and attended a family fun night at school. Family fun night included dying Easter eggs and an egg hunt. It was great fun and Boo had a wonderful time, but it was also very overwhelming and overstimulating. In classic Boo fashion, he maintained his composure very well in the moment and saved the meltdown for Mommy.
We also had some company this weekend. A dear friend from my childhood, Ryan, whom I had not seen in person in almost 20 years came to stay with us for a few days with her daughter Roo. Little Miss Roo is a fourth grader and she is amazing! She bonded with Boo right away, and spent the entire weekend seeking to learn as much as she could about him. She asked some of the most insightful questions I have ever heard. She connected, she was intuitive and just amazing.
Boo is making strides toward resolving his difficulties with toileting independently. Unfortunately, this progress brings about a whole new set of difficulties. I am hesitant to post any more information than that in respect of Boo's privacy. I like to imagine that this blog will continue as he grows and that he will someday be able to read it and look back on his childhood from another point of view. I also like to imagine that he will be happy with what I write about him and that he will not be embarrassed.
Boo's problem solving abilities are improving also. Any time he is denied something he wants, he insists on knowing why. Once you tell him your reasoning, he will set about defeating your argument. You have to be very careful what you tell him. For instance, a while back he asked if he could skip the last step going down the basement steps. The steps end with a small landing and then a concrete wall. If he were to loose his balance and take a tumble, he would meet that wall head first. I told him no, he could not skip the last step because if he did he might hurt himself. He waited till I wasn't looking and went ahead and jumped the last step, then proudly announced that he had done so and had not been hurt. Therefore my reasoning held no weight and he now assumed he had automatic permission to go ahead and skip the last step. He is smart, my little Boo. He thrilled my heart today when he was begging for more treats from his Easter basket and I said no. He announced, "Let's make a compromise" and then he proceeded to propose a compromise and he ended up receiving two bite size mini oreos. A born negotiator, my Boo.
I think my favorite story recently was from last night. Boo was telling the Easter story to our guests, using some pictures from a gift that was given to him at Sunday School. He was showing each of the pictures in the story and linking them with the narrative. "Jesus was riding on a donkey, and then he went into a house that was orange and had this kind of door. He had a special meal with his friends. Then he was praying. They hanged him on a cross on Good Friday and he died. Then they moved away the big stone and he came to life and he got some new sandals.".......Amen, Boo. Amen.
We have been very busy lately too. Boo's Daddy was home unexpectedly for a weekend recently which thrilled Boo right down to his toes! We also went on a field trip to a local farm with Boo's preschool class and attended a family fun night at school. Family fun night included dying Easter eggs and an egg hunt. It was great fun and Boo had a wonderful time, but it was also very overwhelming and overstimulating. In classic Boo fashion, he maintained his composure very well in the moment and saved the meltdown for Mommy.
We also had some company this weekend. A dear friend from my childhood, Ryan, whom I had not seen in person in almost 20 years came to stay with us for a few days with her daughter Roo. Little Miss Roo is a fourth grader and she is amazing! She bonded with Boo right away, and spent the entire weekend seeking to learn as much as she could about him. She asked some of the most insightful questions I have ever heard. She connected, she was intuitive and just amazing.
Boo is making strides toward resolving his difficulties with toileting independently. Unfortunately, this progress brings about a whole new set of difficulties. I am hesitant to post any more information than that in respect of Boo's privacy. I like to imagine that this blog will continue as he grows and that he will someday be able to read it and look back on his childhood from another point of view. I also like to imagine that he will be happy with what I write about him and that he will not be embarrassed.
Boo's problem solving abilities are improving also. Any time he is denied something he wants, he insists on knowing why. Once you tell him your reasoning, he will set about defeating your argument. You have to be very careful what you tell him. For instance, a while back he asked if he could skip the last step going down the basement steps. The steps end with a small landing and then a concrete wall. If he were to loose his balance and take a tumble, he would meet that wall head first. I told him no, he could not skip the last step because if he did he might hurt himself. He waited till I wasn't looking and went ahead and jumped the last step, then proudly announced that he had done so and had not been hurt. Therefore my reasoning held no weight and he now assumed he had automatic permission to go ahead and skip the last step. He is smart, my little Boo. He thrilled my heart today when he was begging for more treats from his Easter basket and I said no. He announced, "Let's make a compromise" and then he proceeded to propose a compromise and he ended up receiving two bite size mini oreos. A born negotiator, my Boo.
I think my favorite story recently was from last night. Boo was telling the Easter story to our guests, using some pictures from a gift that was given to him at Sunday School. He was showing each of the pictures in the story and linking them with the narrative. "Jesus was riding on a donkey, and then he went into a house that was orange and had this kind of door. He had a special meal with his friends. Then he was praying. They hanged him on a cross on Good Friday and he died. Then they moved away the big stone and he came to life and he got some new sandals.".......Amen, Boo. Amen.
Sunday, April 10, 2011
Balancing Act
Last night after Boo went to bed, I spent some time reading through the MomNOS blog. It been a favorite of mine for some time, and I am in the process of reading it from beginning to end. One post in particular really resonated with me. It was about the importance of sensory integration activities, and the signs that the child's sensory needs are not being met. I gave this a lot of thought, especially the concept of "Push, Pull, Lift, Carry" that was mentioned as being the keys to sensory regulation. I recognized that Boo has been under-stimulated sensory-wise the last several days. My mom has described this as "it was a rough-and-tumble day." I have noticed Boo having decreased ability to self-regulate, to attend and focus, to be still, and to listen and comply with requests or instructions. He has also been climbing into bed with me in the middle of the night, pushing so closely up next to me and even sticking limbs under my body, that I nearly end up shoved out of bed. This was something that was mentioned by MomNOS as well. So today, I focused on trying to get those needs met. Before church I asked Boo to carry his bag across the parking lot. The Boo bag is a large canvas bag with his name embroidered on it, which holds spare clothes, snacks, toys, books, and the requisite disposable cup in case of a public bathroom emergency. It is quite heavy and he enjoys carrying it on his shoulder just like Mommy. He had a very hard time being good during church. After church I took him to Grandpa's house to play while I went home to mow the lawn and then went to a mother-daughter program at church. When the weather is nice he likes to spend most of his time at Grandpa's house outside on his tricycle, riding all around the yard. The terrain is very irregular and I figured the activity would be good for his sensory integration. Hours later we went home and Boo watched a video for a while and ate some supper. Then he was climbing all over the furniture, hanging upside down, acting rambunctious. He got out his "Mr. Blue Ball," a large blue rubber ball that my mom got him so he could use it to sit on while watching TV to help develop his core muscles and balancing skills. (something she read in a book on sensory integration dysfunction) He was enjoying sitting on the ball, but quickly got out of control with bouncing on it and then kicking it in the house. Desperate to harness his energy, I decided to pull out something we hadn't tried in probably nine months. I got out the sit-n-spin. He was excited about it at first, spent a while using it appropriately and really enjoyed it. I took a picture of him on it and he noticed me doing so. That distracted him completely. He came up to me and raised one foot in the air, asking me to "take a picture of my stinky foots." I did and showed him to it, which delighted him. Then he got on all fours and put his head down and asked me to take a picture of that. I remembered that his teacher had told me last week at parent-teacher conference that he would not attempt a forward somersault. I took the opportunity to work on it in a low pressure environment. I helped him get into position and showed him how to push over. He thought it was fun a few times, then he wanted to watch me do it. Believe it or not, at my age I can still do a somersault! But after three, I dared not do it again. For whatever reason, Boo had decided to go down the hall and hide in his bedroom with only his head sticking out into the hall to watch me. When I told him I was done somersaulting, he ran down the hall full speed and crashed into my open arms, knocking me backward. He often does this same activity, only crashing full speed into the couch instead. I decided to use the activity that seems to fulfill a sensory need for him. I gathered up pillows and piled them on the floor behind me and then held two large pillows in front of my body and head and encouraged him to run into me with the pillows. He really embraced the game, squealing with sheer delight as he ran, and laughing with joy as he pushed me down. We played this game for probably 20 minutes. Then he decided it was MY turn to run, and he positioned himself among the pillows, put two in front of himself, and giggling, told me to "go." I jogged down the hall, fell to my knees in front of him, and used my arm to push him backward into the pillows. When he tired of that activity, he just went craaaazy! Throwing hotwheels, spinning the sit-n-spin with his hands as fast as it would go, waving the sit-n-spin's "steering wheel" around in the air like a magic wand, running, crashing, etc. I tried to get him to take a bath, which is an activity he loves and usually relaxes him. He insisted he did not want a bath, but he did ask for some computer time. By then it was 8:00 and I intended to have him in bed by 8:30. I was hesitant to allow computer time because it is so hard to transition away from it when time is up. But I glimpsed an opportunity and grabbed it! I told him that he could have 30 minutes of computer IF he would brush his teeth. Tooth brushing is one of our biggest fights. He HATES it with a passion. He doesn't like the way it feels. Especially on his upper molars. There have been a few small seasons when it wasn't much of an issue. He still didn't like it, but would allow me to do it. But whatever technique seems to be working will wear thin in just a few weeks and we are back to an ineffective wrestling match. Because of this, I am ashamed to admit how poor of a job I have done at insisting that it gets done. I was pleasantly surprised when he ran to the bathroom and pulled his toothbrush out of the drawer. I had bought him a Thomas SpinBrush a while back. His occupational therapist had suggested a vibrating toothbrush to "desensitize" him to brushing. He took out the brush and did a fairly good job at cleaning his teeth. He was hesitant to do his top molars. Since he was so agreeable, I asked if I could help him, and he let me brush his teeth also. When I did it without pushing the button, he requested that I "tickle" his teeth. I got a good brushing done on the bottom and the fronts, but when it came time for the top he became antsy and implored "not on my skin!" When computer time was up, I was shocked by the absolute fit that ensued. Tantrum doesn't even begin to cover it. I have not seen a meltdown of this magnitude for months! I had been in hopes that all the sensory integration activities would help him to regulate and to calm. But just the opposite happened. So I am thinking that perhaps I overdid it. Perhaps it was too much in one day. Maybe I swung the pendulum to the opposite side, with the same result. I will have to work at finding that delicate balance between under-stimulated and over-stimulated.
Tuesday, April 5, 2011
Great Strides
We have not posted here in a while. Busy busy busy at our house this spring! The weather is beginning to warm up and we have been able to spend more time outside lately, much to Boo's delight. He loves playing in the backyard with his dog. We also tilled up a garden spot this year and have been working the soil in anticipation of planting time. Boo likes to use the rake to pull the dirt around. He also likes to throw the dog's ball into the garden despite repeated warnings not to do so. One day he ended up having the ball taken away and put up in the shed for that reason. Now, I did this to show him that I meant what I said about not throwing the ball in the garden (because I don't want the dog in the garden) but there were still two other balls just like it elsewhere in the yard for them to play with. Silly me, I thought perhaps Boo would go get one of them and continue playing. What was I thinking? He fixated on the one that was taken away. He cried, wailed, begged, pleaded, bargained, apologized, anything he could think of to get me to give him back the ball. I stood my ground. That's when the little squirt got clever! Our Boo is smart, oh so smart. I have my work cut out for me as he gets older. I was busily raking chunks of unwanted grass out of the freshly tilled garden and I THOUGHT that Boo was playing happily with the other two balls in the yard. One accidentally (or so I thought) ended up going over the fence into the neighbor's yard. I warned him to be careful because we cannot get the ball out of the neighbor's yard till we see them again. I went back to raking. Next thing I knew, both remaining balls were in the neighbor's yard, and Boo was reasoning to me that the dog NEEDS the ball that I took away because all his other balls are over the fence. Oh, what pure logic! As much as I LOVED to see his use of logic and problem solving, alas, the rest of the day was spent sans ball for both dog and boy. Two days later when the balls returned, I had to warn him only once and remind him what happened the last time. He quickly moved to another part of the yard to continue playing. Lesson learned, I hope! Last weekend was so wonderful for us. On Saturday Boo and I spent the day with much of our extended family. We joined five other family members on a trip to the big city and shopped till we dropped! It was not Boo's kind of shopping since it involved none of the things he is interested in buying. None of the things I brought along with me to occupy him were helping. Not even the new issue of Highlights magazine, which is usually a hit. He wanted to be out of that cart and running around. I wanted to be enjoying the time with my family rather than chasing down an unruly toddler. All in all, he did quite well, especially considering that we left on this outing at his usual nap time. After several hours of shopping, during which Boo tried to convince my cousin (who is expecting) that "your babies will LOVE this!" showing her everything he could get his hands on, we returned to my aunt's house to spend the evening with family. The house was full and so were the hearts. We had a fabulous barbecue, although Boo of course ate none of it. One of my biggest lifelong goals is to get him to eat a semi-normal variety of foods. That one is going to be a very long road. Sunday turned out to be a phenomenal day. We were up quite late Saturday so we accidentally slept in too late to go to church. We lounged and played in the morning and then went outside to enjoy the record breaking warmth and pleasant sunshine. I decided it was about time to start watering the yard and set about checking the sprinkler system to see if all was well with it. It came on before I expected and before I could warn Boo. One of the things he hates most is having water in his face. He hates rain or snow that is "drizzly" because he can't keep it from blowing in his face. Even in the bathtub we always have to have a dry washcloth handy to wipe his face with. To my surprise, I walked out of the garage to find my boy running through the sprinklers laughing and delighted! Back and forth, back and forth he ran across the lawn chasing the spraying water soaking himself head to toe. He ran up to me grinning and his face was covered in droplets of water that he didn't seem to notice. He ran all over the front and back yards from one sprinkler to another, testing out the spray of each one. I don't know who was more giddy, me or Boo. Later that afternoon, we needed to run to the store for a few things. Because his tennis shoes were wet, he couldn't wear them to the store. Encouraged by the breakthrough of the morning, I brought out the flip flops I had bought on clearance at the end of last summer. Last year we had bought a pair in July that were American flag designs. (He loves the flag) He was excited about them till the first time I put them on his feet. One feel of that plastic between his toes and that was it. No flip flops for Boo, thank you very much! But Sunday I decided to push the issue juuuuust a little. I told him that his tennis shoes were wet and couldn't be worn. (he would refuse them anyway, as he won't wear things even the slightest bit wet) He did not like the idea of the flip flops because there were no socks. I showed him how I wore mine and he was unconvinced. He finally conceded to wear them IF he could wear socks. Why not? I got out a pair of socks and put them on him. But when he felt that bulky bit of sock being wedged between his toes, he thought better of it and opted for "none socks." We put the shoes on him and he walked cheerfully through the grocery store, pushing the cart into things left and right. He also had trouble keeping them on his feet, as he wasn't able to figure out how to use his toes to keep the shoes on. Every few steps one of the flip flops fell right off his foot. But it was still counted as a great victory! Later that day we were in the basement doing laundry and for whatever reason I decided to pull out my elliptical exercise machine and get on it. Boo was intrigued, asking lots of questions. I offered to let him get on with me and try it, but he was adamant he did not want to and ran away from me. A few minutes later, I emerged from the laundry room with my basket of clothes to find Boo standing on the elliptical walking his little legs off. He was SO proud of himself! He continued to return to the exercise machine over and over the rest of the day, and when he finishes he always asks me to check the timer display and tell him "how many numbers did I exercise?" This is another great thing for Boo, as we have discovered that his ability to calm down, be still, and pay attention is greatly helped by resistance activities (lifting/pulling/pushing heavy things, elliptical machine, etc) and by very tight squeezing hugs and deep pressure massage. The fact that he loves this and thinks it a game will serve us well. In the evening we had a cousin over for supper and then Boo invited her to join him in the backyard to play. We all went outside and the flip flops were once again falling off his feet. He soon decided to just leave them behind and play in the yard barefoot. This is the child who will remove his shoes because of one tiny sand pebble or a wrinkle in his sock, and he was running all over the dry crunchy grass that has yet to begin to green up for the spring. I watched in awe. Soon a thunderstorm front moved through and the wind increased dramatically. We played a wonderful game of "basketball" which involved throwing a large ball into the wind and then chasing it down and catching it. I was totally amazed by the end of the day. As I shared Boo's accomplishments throughout the day on facebook, my mom posted "put that boy to bed, my heart can't take anymore!" I wish I could figure out what the magic formula was that led us to such a wonderful day, but it is a tremendous encouragement for us all.
Thursday, March 24, 2011
And Another Thing...
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.
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.
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!
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