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?

Getting Our Groove Back

As you probably already know, we've had a rough go of it lately in the Boo family. Aside from the fact that I was at the end of my emotional rope, with no reserves left to help me cope with what was happening, as was Boo, I was totally flummoxed as to where it was all coming from. In the last few days I have learned a few things that have shed some light. You see, I already knew that dealing with the switch in routine from going to Mammo's house every day to staying home with Mommy every day was difficult. I also knew that at school they were practicing for the spring program, which was taxing for him as well. Not only was the program itself stressful, but adding the practice time to the already short school day meant that there was little time for play and that often the classwork had to stop before it was completed. Boo has always had an extremely hard time stopping something before it's finished. TV shows, games, craft projects, rambling run-on sentence filled soliloquies, whatever.

What I did not know, was that Boo was also being tested by the school psychologist from the early education center in preparation for his assessment for the spring IEP. A call from the psychologist Friday revealed that the type of testing done had required that the tester continue testing until Boo gave incorrect answers on a certain number of questions in a row. Boo. Hates. Being. Wrong! He really can't tolerate it. And the psychologist told me that it had been difficult on him, to the point that he was even trying to look at the notes that were being taken to see when a check mark or an x was written. Feeling like he has failed is one of the hardest things for Boo to tolerate. And it doesn't matter how much we encourage (and we do!), his perception is that he's done something terrible when he is wrong.

What I further did not know, was that there were some discipline issues going on at recess. There were a couple boys who had been incessantly playing chasing and tackling games. Boo finally revealed this to me on the way to school Friday morning. He told me that he really doesn't like it when they do that and it hurts him and makes him sad. I told him that he should tell the kids not to do that to him, and tell them that it makes him sad and angry. He told me "I can't!" I told him that he should go and tell the teacher when it happens and she will make them stop. He said he could not do that either. When I asked the teacher about it, she admitted that it has been an ongoing problem for some time and she's had little success getting it to stop. I told her of my conversation with Boo and she seemed puzzled. She said, "But he does those things. He tells me what happened, and when I tell him to tell the boys to stop, he does." So, what Boo meant by saying he couldn't tell the boys or the teacher wasn't that he couldn't physically do it. He meant that he was unsuccessful in doing so.

So here is this poor kid, trying to deal with a major change in his daily routine, being forced to continue questions and tasks that he knows he is failing at, having to stop his school work abruptly without finishing, receiving very little time to let loose and play, and what little playtime he does have is punctuated by being physically accosted by his friends and all his attempts to self-advocate are to no avail. No. Freaking. Wonder. he has had so many violent meltdowns lately. And not knowing what was happening, here I was giving him the hard line of "oh yes you will go to school today, that's not an option." He was unable to communicate to me that he didn't feel safe there!

Well, Friday he was able to spend the afternoon with Little Britches and The Boo Whisperer. I spent my day with my mom, did some shopping, and had lunch at a fabulous local sandwich shop complete with live jazz band. By the time I picked him up that night we were both emotionally recharged and ready to be together again. We came home and Boo baked cupcakes for his birthday party. Today, we had the most amazing party ever! So. Much. Fun! <pictures here> After Daddy gave him a bath, I was laying beside him in his bed, waiting for him to drift to dreamland, he rolled over, stuck his little finger at me and said "pinkie promise?" (A concept he just learned from the movie Despicable Me that he's been watching lately) I asked him "what are we promising?" His reply: "we love each other." I stuck out my finger and said "yes we do, buddy." He curled his tiny finger around mine. "Pinkie promise?" I answered emphatically, "Pinkie promise!"

Thinking and Being

I spend a lot of time reading about autism. I read blogs, articles, facebook pages, you name it. Sometimes it irritates my family when they see the housework going undone and me sitting with my laptop. And I can understand that feeling. Sometimes I even get irritated with myself when I sit down to read one thing right quick, and a dozen links later I realize that I have let several hours get away from me. But there is a reason for it. Every once in a while as I am reading, there is a spark, a click, something snaps into place and I see things differently. I put one more piece of the puzzle into place, and it helps. It helps me, it helps the world, and it helps Boo.

Yesterday I found myself reading this blog post written by Rachel Cohen-Rottenberg, a writer who has autism and who wasn't diagnosed till she was 50. The point of the post was about the fact that people with disabilities who have the ability to overcome them and "pass" for a period of time, become expected to be "normal" all the time, or are believed to be "making up" the disability in the first place. It was both moving and fascinating for me. But in the midst of it, I read a line that stopped me in my tracks. In explaining the amount of energy and concentration required for her to "pass" as a neuro-typical person, she said, "I sprinted to keep up with rapid-fire conversations, despite my auditory delays, my inability to use nonverbals, and my need to translate all of the words flowing like an endless caption in my head to speech."

I hit me upside my head like a 2x4. I thought about Boo's speech patterns. I thought about the way that he uses 57 words to explain or describe something when 3 would do. The phrase "all of the words flowing like an endless caption in my head" hit a nerve. I remembered the descriptions I'd read about the way in which many people with autism "think in pictures." I considered that while my thoughts are language-based, showing up in my head as words, Boo's thoughts often seem to be conceptual or associative in nature. Something he has to translate, much as one might translate sign language into spoken words. You know how they say a picture is worth a thousand words? Imagine thinking in pictures and being expected to translate those thoughts into as few words as possible. I thought about the way that he gets so frustrated when he gets interrupted or when the words don't come out just right and it causes him to go back to the beginning and start all over. I thought about how frustrating it is for me to listen to it day after day. How often I attempt to somehow get him to abbreviate the soliloquy. I realized that I have been doing exactly what this woman was describing; forcing him to "pass." To behave as though he doesn't have autism. To appear as though his brain works like mine.

For the first time I realized the weight that is placed on my little boy's shoulders. I considered that what I have been doing with him for the past 14 months, though it comes from a heart of love and a desire for his long-term well being, was adding to that weight. I have been trying to "fix" him, to a degree, without realizing it. Though I understand on an intellectual level that autism can't be cured or fixed, that his brain is wired in a different and unique way that is never going to be altered...

My son is an amazing person. He is full of sweetness, tenderness, love, compassion, joy, laughter, curiosity, and intelligence. He has the biggest heart of anyone I have ever known. He inspires me daily. But the struggles he deals with also scare me. I fear for him because he is so tender, and because he so deeply craves relationships with others, just as we all do. I fear for him because he is different and kids are cruel. When I see his more difficult "symptoms" rear their ugly heads, I don't see today...I see tomorrow, next year, five years from now. I see him sitting alone at a lunch table. I see him chosen last when teams are picked in P.E. class. I see him listening to his friends on Monday talking about the fun they had over the weekend while he sat home alone uninvited. And when I try to teach him to behave more "normally" I am trying to spare him that future pain. To teach him to "pass." But in trying to spare him pain tomorrow, I am causing him pain today.

I remember how I worried so much last year when Boo first began attending preschool. That first year he went two days a week, just three hours at a time. And he excelled. He soared! He appeared so "typical" that his teacher seemed confused by the IEP and scoffed when I started talking about having him diagnosed. But what no one else saw was how he completely fell apart when he would come home from school. Even then I surmised that it was taking so much out of him, that he was trying so hard to fit in, that he used up all of his emotional reserves to do it. And it broke my heart because life shouldn't be so hard for such a little guy. He should just be able to be himself and that should be good enough for the world. They should recognize his awesomeness just the way he is.

I have been thinking about this all day today. Considering and stewing. And what I have determined is this: My job as Boo's mother is not to help him fit into the world. My job is to help him capitalize on his strengths and maximize his abilities. And my job is also to help the world accept him for who he is. He shouldn't have to pretend to be what he isn't. And that is a part of what this blog is all about. I have been learning so much this past year. I have learned from others who have been there and done that for much longer than I have. April is Autism Awareness month and I've contemplated what that means to me. I've thought of the many people who have become my friends even though we've never met or spoken. People who have educated, informed, inspired, cheered, and enlightened me. The Autism Community is an amazing thing. I still feel like an outsider often times, like someone standing on the outskirts and feeling my way around. Most of the time I have no idea what I'm doing and I go on instinct. But there are people out there who have thrown me virtual life-lines. I want to introduce you to a few of them. Please take the time to visit Mom-Not Otherwise Specified, Diary of a Mom, Running to be Still, Try Defying Gravity, and Stimeyland. This is just a drop in the bucket of the blogs and resources I have learned from, but it's a good jumping off point. The great thing is that you can pick one and then start following links and learn so much more than you ever dreamed there was to know about Autism and the people who live with it!

My goal is to help to create a world where Boo doesn't have to work so ridiculously hard just to be Boo. If you haven't been personally touched by Autism, you should open your eyes. Because I can promise you there is someone in your life who is living with it. A relative, a friend, someone at work, someone at church, the person who rings up your groceries, someone in your child's class at school, the person on the next treadmill at the gym, or the mother you passed by while you were shopping. Someone whom you encounter is touched by Autism. And I want you to begin to learn what that means. What it looks like, what it feels like. I want you to be equipped to be a friend, a teacher, a helper in whatever capacity you can. And I want you to raise your children to be compassionate and understanding and accepting. I want you to help me create a world in which Boo can just be Boo, and that will be enough. Won't you join me?

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.