Chez Mommy

"Mommy, let's pretend this is a restaurant."

"Ok." (speaking in exaggerated accent) "Good evening, Sir. Welcome to Chez Mommy. How can I serve you this evening?"

(also in exaggerated accent) "I think I would like the chicken with bones."

"Very well, sir. I'll be right back." (speaking into the empty kitchen) "Chef, the gentlemen would like the chicken with bones." (bringing him a chicken leg on a plate) "Here you are, Sir. Is there anything else I can get for you?"

"Yes, I would like a drink."

"What can I get you to drink?"

"I'll have strawberry milk." (stage whispering) "don't forget to tell the chef!"

(speaking into the empty kitchen) "Chef, the gentlemen would like strawberry milk." (setting a cup on the table) "Here is your strawberry milk, Sir."

<minutes pass>

"Oh waiter!"

"Yes Sir, how can I help you?"

"I would have some dessert please."

"What can I get you for dessert?"

"I would like some runts please."

"I'm sorry, Sir, but we are all out of Runts. Can I interest you in a delightful pack of two Starburst?"

"Ooh! TWO desserts! Yes, I will take some Starburst."

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.

Pay No Attention to the Mother Behind the Blog

People in my "real life" and even some from online are apt to compliment me often on my parenting. They tell me what a great mom I am, what a great job I'm doing with Boo, how lucky he is to have me. At times, I've actually felt quite exasperated with his special ed team for telling me that I am already doing everything they would recommend, because that doesn't give me any new tools with which to work. It's nice to hear, but not practically helpful. I try to always accept such praises humbly and graciously but not to let it go to my head. But I am human, and apt to get a swelled ego at times. Especially when my efforts with Boo are particularly effective. When I am able to calm the tempest, solve the sensory puzzle, or impart understanding of a new concept I am liable to swell up a bit and pat myself on the back. But there is one small person with a big influence in my life who knows how to swiftly and effectively bring me off my high horse and put me in my place.

I have found myself sitting on the dining room floor bawling while Boo rages and writhes nearby, the popcorn strewn about that he spilled and refuses to help pick up seeming to mock me. I have found myself sitting on the bedroom floor while Boo sits naked beside me screaming, unwilling or unable to choose between the new swimming trunks with the drawstring he can't stand and a pair of regular shorts, but terrified that the friends waiting for him to join them in the backyard will give up and leave. I have found myself sitting in the living room bawling as Boo writhes in pain, refusing all attempts at comforting him, refusing to allow any of the things I assure him will alleviate the hurt. I have found myself sitting on the front porch bawling as he howls and screams in the front yard, giving the neighbors a dramatic display of what the ugly side of autism can sometimes look like. I have found myself sitting in the car in front of the local convenience store, my fifty pound five year old having a full-on tantrum in the back seat, then clambering into my lap and proceeding to beat me up and scream as though he were the one being attacked. I have watched the scornful, shocked, judgmental, and pitying glances from onlookers as I tried in vain to bring my child back to a state of self-control.

It is times like those when little Toto pulls back the curtain and reveals the faltering, stammering, feeble human behind the smoke and mirror show that was the Great and Powerful Oz. I feel like a fraud. Like a sham. Like I have no business writing this blog, or talking about autism as if I have any clue what the hell I'm doing. I feel stupid, ineffectual, impotent. I have no idea what I'm doing most of the time. It's all by the seat of my pants. I try to make it all look good on the outside, but on the inside I constantly feel like I'm screwing it all up. I don't understand him. I don't know what he needs. I don't understand how he feels. I can't even get him to do something so simple as to pick up some flipping popcorn he spilled on the floor. I feel like I'm failing my boy. My cherished, wonderful, beautiful little boy, to whom I would give anything in this world that could help him mitigate these challenges, if only I had it to give.

When he begs me to help him "figure out what to do" I ache inside, wishing I had the power he believes I do. And all I can do is hope, pray, and believe that all the tools he needs to help him successfully navigate this world are things he already possesses. I hope that, like the Wizard, I can help him find and use the tools he already has, and show him how to get where he wants to go.

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?

The Three Food Groups

Getting Boo to eat is a struggle.

Correction: getting Boo to eat a halfway balanced, halfway healthy diet is a struggle.

Like many kids on the spectrum, foods are a huge issue for him. The problem seems to be largely a sensory issue. As a baby he would eat literally anything we put on a spoon. We made our own baby foods by steaming and pureeing whatever fruits and veggies were in season. He ate green beans, squash, avocado, pears, peaches, blueberries, cranberries, pumpkin, anything we could make smooth. But when the time came to transition to table food, he abruptly stopped eating. It has been a struggle ever since.

The foods that we do get him to eat have one thing in common. Consistency. As in, the food must be consistent throughout. Every bite having the same flavor and texture as the one before it and the one after it. For instance, he eats yogurt, but only flavors like orange, banana, key lime, and vanilla. If there are chunks of fruit in it, forget it! He likes various kinds of chips and crackers. He likes bread and toast, but only the "right kind, without seeds." (meaning NOT multi-grain) He likes a few kinds of cereals, and he likes milk, but you don't put the milk ON the cereal. For a long time the single source of meat in his diet was McDonald's chicken nuggets. No other kind would do. Thankfully we have recently discovered a love of Banquet brand popcorn chicken. He occasionally likes pizza, but only cheese pizza, and only from certain places. And if the sauce is visible? Forget about it!

I remember once a couple years ago at a church dinner I convinced him to try a baby carrot. At that time I still thought he was just being "picky" and that if I could just expose him to all the great flavors of foods I love, he would learn to love it too. I coaxed him into taking a bite with the promise of a piece of chocolate cake as a reward. He bravely bit off the carrot, chewed, and twisted up his little face as he tried to swallow. But he just couldn't get it past his gag reflex. The texture was too much for him to deal with. He threw up.

At any given time there are maybe 10-12 foods that Boo will eat, most of them not very healthy. Right now he is living on popcorn chicken, "stick pizza" (garlic cheese bread), toast, bacon, graham crackers, cheez-its, goldfish, lucky charms, fruit loops, fruit snacks, popcorn, and chocolate muffins. He will eat these same items, and only these items for MONTHS. Then suddenly he will seem to get tired of them. (who can blame him) He will refuse to eat the foods he loved just the day before, but it will take a couple weeks for him to find something he can put in its place. Those weeks are hell. When he is hungry, his behavior is horrid. But hunger does NOT drive him to eat if he doesn't have a food presented to him that he finds acceptable. Even before his diagnosis, when I would seek help for his "picky" eating habits, well meaning friends would give that sage advice "he won't starve." I wasn't so sure. I'm still not. I think if all he was ever offered to eat was vegetables, whole fruits, rice, and pork chops...he would starve himself. Seriously.

Our best defense in this struggle has been a sort of classification system for his foods. He is highly motivated by sweets. He loves chocolate (as long as it doesn't have something evil like nuts in it) and cake and ice cream and things like that. We try to limit these foods as much as we can. Early on, we began explaining the need for him to eat "healthy" foods in order to grow and be strong. He is not motivated by growing. He will tell you straight up that he prefers to remain a kid. And he insists that he can be strong simply by exercising. So our only successful motivation for him to eat healthy foods, was to reward him with "treat" foods. Now, I would prefer to keep the ratio of healthy foods high compared to the treats, but somehow we have gotten ourselves into a 1:1 rut. If you have a spectrum kid, you know how hard it can be to work your way out of those ruts! So the best I can do right now is to try to increase the portion size of the healthy foods, and decrease the portion size of the treats.

Now what happens when he decides to dig in his heels and refuse the healthy food? Because he has a healthy dose of stubbornness that his father insists he gets from me, but we all know comes from his father. ;) Sometimes he would simply rather starve himself, all the while throwing a loud ugly fit about being hungry, than eat something healthy. This is where the third category comes in: "snack" foods. These are foods that are a sort of compromise. They may not have much nutritional value, but they ease his hunger and help abate the behaviors without filling him full of sugar.

So here's how it ends up working. If he's hungry, I try to get him to eat a healthy. If he eats a healthy, he gets a treat. If he doesn't want to, he can choose a snack food, but a snack will not earn him a treat. It was never a system that was set up intentionally or proactively. We just kind of naturally fell into it from a combination of our terminology and Boo's tendency to categorize the world. But hey, it's working for us. And who cares if strangers look at me like a child abuser when my kid refers to McDonald's "chicken and fries" as healthy food? They just don't speak french.

Meet My Friend Maple

This is "Maple."

A few weeks ago, while playing at Mammo's house, Boo stumbled upon what has become one of his best coping tools. This simple unassuming character used to be a knee pillow for Mammo. It is made of memory foam, and was originally covered with a removable pillowcase. Boo discovered the zipper on the case, opened it, slipped his hand inside, and fell in love! He oooh'd and ahhh'd and marveled at the feel of it. He quickly removed the pillow case and proclaimed "I like how this feels, Mammo. I could just feel it all day." That evening he brought it home with him, and it has been his companion ever since.

He likes to get it out when he needs a bit of extra sensory input or when he feels particularly upset. He likes to squeeze it, smoosh it, push it into his chin, and hug it. Suddenly this morning, he began doing something new. He suddenly decided to anthropomorphize it! He gave it the name "Maple." He started giving it drinks of his juice and bites of his cereal. He began talking to it. He asked if he could take it to school. Considering the recent difficulties he has had, I thought this would be an excellent idea. I told him that he would have to leave Maple in his cubby during school, but that if he started to feel sad or upset or nervous, he could ask Mrs. K for a few minutes to "squeeze maple." He was excited about this plan.

When we arrived at the classroom, Boo was thrilled to show every classmate, Mrs. K, and several of the other moms his new find. He walked up to each of them and announced "This is my friend Maple. I like to squeeze him when I feel sad or nervous." He then stowed Maple in his cubby and sat down to stretch rubber bands onto a pegboard with his classmates. I was astounded at the change since last Friday! He never once argued with me about going to school. He never gave me a moment of trouble. Apparently he had a bit of trouble following the rules at school, but he didn't seem overly concerned about it. (usually all it takes is one stern word from the teacher to send him home broken hearted and declaring his hatred for school)

Tonight we had our first family BBQ of the season. (My family on my dad's side have a tradition of getting together one night each week during the summer for a BBQ/potluck meal, and it's one of my absolute favorite things about the season!) Boo didn't want to go, of course. He never does, though he always has a great time once we get there. To make matters worse, Dad made the cardinal mistake of starting an episode of one of Boo's favorite shows (Billy the Exterminator)  just before time to leave, without enough time for Boo to finish the episode before we had to leave. Because he was already starting a fit, I figured I'd better toss Maple in the car too.

Surprisingly, I didn't have hardly any trouble from Boo the entire evening. There was one moment, when it was time to eat, that he started to put up a fight. I suggested that he might want to go get Maple out of the car. He said no, then immediately huffed to the car and retrieved it. He then proceeded to introduce it once again to everyone present as "my friend Maple." He then set it on the table, and never again picked it up till we came home. He never gave me another moment of trouble the entire evening. So, while Maple may be a friend to Boo, he has suddenly become MY bff!

Update: A couple days after writing this blog post, I was watching Spiderman and his Amazing Friends with Boo. He watches episodes of this series by himself frequently. The episode we watched had a story of a lonely old man who was accidentally given special powers to make anything happen that he wanted. One of the first things he did was create for himself a friend who would never leave him. The friend was a cat, and it's name was Mable. Light bulb ON!