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.

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.

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!