Boo's Menu

As most of you already know, self-restricted diet is a huge issue for Boo, as well as many other spectrum kiddos. He can be very hungry and begging for food, but everything we suggest gets shot down. One day, out of pure exasperation with listing the options for the hundredth time, I wrote down all the items that Boo is typically willing to eat that we have in the house. I handed it to him and told him he could choose any item from the list. He took a quick glance and chose a food. Just like that. I was blown away. Boo is so much better with visual communication than verbal, I guess this was just easier for him to process. Since then, I keep this list handy at all times. He has even learned to ask for it. It cracks me up to watch him peruse the list of foods and choose an item, often by pointing to it, as if ordering from a restaurant menu.

So...Um...Yeah. This Was Our Bedtime Discussion.

Boo: "Mom, when are we going to have a baby?"
Me: "A baby?"
"Yeah. A baby that we can keep and take care of. Can we have one?"
"Well, I don't know about that. It takes a long time to get a baby."
"I know. We can get one from Mammo's house. Or Grams's."
"Well, they don't have any babies. Babies are made in their mom's tummy."
"I know that. So I want to have one when we wake up."
"It takes nine months for a baby to grow and be ready to be born! Why do you want us to have a baby?"
"So that we can have another kid."
"Well, that's something that you're going to have to talk to God about. It's up to God to decide if we have any more babies."
"Can you talk to God about that for me right now?"
"Sure. Dear God, thank you for this wonderful day. Thank you for our field trip, and all the fun we had with our friends. And God, Boo would like for our family to have a baby. Will you please let us know if that's something you want us to do? In Jesus' name we pray, Amen. And Boo, you can talk to God yourself too. You can tell him about anything you want. And if you don't want to talk to him out loud, it's OK. You can just think your prayers, and God will hear them."
"He will?"
"Uh huh. He knows every thought you think, and every feeling you feel."
(Boo makes a series of faces, sad, angry, laughing, confused...)
"Did He know what I was thinking Mom? Did He hear me?"
"Yes he did."
(Boo lays quietly, looking serious for a few minutes)
"Mom, who's that girl who died in a car accident?"
"That's your sister. Her name is Sissy."
"I asked God if He would come to the earth and make Sissy be alive again."
"And He will do that someday, we just don't know when. It might be very soon, or it might be when we are very old."
"Yeah."

On Thomas the Tank Engine

Thomas has been a staple in our house for well over three years now. On Boo's second birthday he received a starter set of "trackmaster" tracks and a couple engines. From that point forward most days have found our living room half covered in some configuration of tracks, bridges, tunnels, and stations. We watch the show on TV and we have several videos and books. Boo has memorized pretty much every plot, and most of the dialog. He re-enacts these on his track set. He has most of the major characters, but is willing to substitute one engine for another if necessary. This is one of his major ongoing preservations that ebbs and flows but never really fades.

Last year I had the opportunity to attend a lecture given at a nearby medical school campus by the developmental pediatrician who diagnosed Boo. She spoke on the subject of autism. The content was pretty basic, and while I didn't really learn anything new per se, I enjoyed hearing her perspective as a clinician. After the lecture there was time for Q&A and that was really the best part of the whole thing. I remember being struck when she commented that a great many of her autistic patients have a fascination with Thomas. She commented that she found it interesting that these children, who have such difficulty with effectively communicating emotion both receptively and expressively seemed to feel most comfortable with these characters who have faces that do not move. (This was before the popularity of the newer CG version of the Thomas show.)

For some reason, of all the things that were discussed there that day, this one idea stuck with me. I found it interesting, but it just didn't feel correct somehow. I couldn't put a finger on it, but it just stuck. Kind of like a piece of popcorn hull stuck down in your gums. And then a while back it struck me suddenly. I knew why she was wrong. At least for Boo. I can't speak for all the other spectrum kiddos out there who love the little blue engine. But for my Boo, the reason why Thomas is so comfortable for him, so easy to watch and respond to, is because of one simple thing. It's narrated! He doesn't have to work to understand context or implication. He doesn't have to figure out what a character is feeling or thinking, or what motivates his/her actions. The narrator simply tells you all that. He is not left feeling confused about what is happening and why. He doesn't have to ask incessant questions and feel bad when his parents get annoyed. He can just relax and watch and it's all explained to him. I think this is also why he responds so well to Word World.

I watch him play and interact with the world. He narrates everything he does! He talk non-stop. He explains every. little. thing. down to the last detail. Sometimes it can make me crazy. But having an understanding that this is a tool he uses to make sense of his world, to make order of the chaos, helps me know how to help him. And it gives me patience. And I find myself narrating things for him without even thinking about it. Because he does not understand sarcasm, implied humor, or subtlety. So when something happens around him that I know he won't understand intuitively like others do, I tend to explain it before he even has to ask. It helps to limit frustration on both our parts.

What about you? What do you do to help yourself or your child navigate the world a little easier? What are some of your best tools?

Four on the Floor

It's been quite busy around here lately! A class field trip, Easter, a friend's birthday party, a church carnival, daddy being home for a week, and Boo's birthday. There are so many things I have longed to share, but haven't found the time to get my thoughts out. The birthday was a huge success! It was the first time Boo had a party with his friends. We had a backyard bash, and the day was a gorgeous as could be.

There were only two hitches. First, Boo refuses to believe or admit that he is now four. He insists on staying three. He is not motivated by the idea of being bigger. He wants to stay little and he says he likes being three. While I relish the fact that my little guy isn't in a hurry to grow up, facts are facts. But he keeps insisting he is three. LOL

The second problem involved his birthday present. Last year, he got his first bike, a 12 inch one that he adored, but which was causing him to practically eat his knees this spring! We got him a new 16 inch bike and he knew it was coming. He was so excited to get it, the very instant we gave it to him he insisted on going for a ride. He also received a new helmet and knee and elbow pads. He readily put them on, which surprised me. I had never required it of him in the past, and as a general rule he hates things on his head. But he geared up and we headed out. When Boo goes bike riding, he has a very specific path he takes. Any suggestion that we vary the path is met with extreme resistance. Once I got him to go half a block out of route at which time he had a total meltdown and insisted on going home. Later when he was more able to discuss his emotions he told me that he had been lost because he didn't know where he was. The route he takes is not circular. We go across town and down a certain one way street, and back the same way. On his birthday, we went all the way to the end of the one way street, turned around, and got about a third of the way back when the problem started. Having ridden the bike about 40 minutes, he suddenly realized that both of the training wheels on the bike did not turn at all times. Of course, that is exactly how they are designed to work. As he leans to the right or left, the training wheels support him and keep him from falling. But in Boo's mind, wheels are made to spin. And if a vehicle has four wheels, then all four wheels must spin. He has rejected toy cars in the past if all four wheels did not spin freely. So the fact that the training wheels "didn't work right" rendered the entire bike un-rideable. I reasoned, I bargained, I begged, I cajoled, I threatened, I feigned walking away, nothing worked. My Boo sat motionless and sobbing in despair, refusing to pedal the bike. I reached my breaking point. I turned into Mommy Hyde. I yelled, I was angry, I threatened to take the bike back to the store. I ended up pushing him on the bike all the way back home. You talk about a LONG walk! By the time we arrived home, Boo wailing and me seething, he was begging me to take his bike back to the store. I took him into the house, and eventually was able to calm both of us down enough to comfort him. I told him I would ask Daddy to "fix" his training wheels so they would work right and he said that would be acceptable. I left him with his great grandma and I went out to the garage. It didn't take long before I collapsed into a sobbing heap of bitter desperate tears. I cried to my mom and my husband, told them how horribly I had behaved toward poor Boo. How much I hate myself when I treat him that way. How very hard it is at times to remember that it's not his fault, he can't control it, and he's not just being obstinate. It really does bother him THAT much. I felt like the worst mother in the entire world. My husband and I wept in each other's arms, then he got out his wrenches and lowered the training wheels as low as they would go. Later that afternoon when everyone was more relaxed, Boo agreed to try the bike again. The wheels were low enough that they at least appear to him to be spinning at all times, and he is thrilled with the bike once again. Of course, now my mantra is a constant reminder to look ahead of him instead of staring at the training wheels to make sure they are spinning.

Strict Constructionist

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?

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.