This morning Emma asked for “toast with cheese” for breakfast.
“How about toast with almond butter?”
“No toast with almond butter. Cheese. Here.” She thrust a wedge of sheep’s milk cheese at me.
When she was first beginning to speak she would say a phrase, usually not a single word, such as “All done” or something that sounded like, “bye-bye, see you later” and then the next week we would hear a different phrase, but the new words weren’t added to the previous, instead the previous phrase was never heard again. Like her pickiness with food, she seems only able to tolerate a set number of things. Out with the almond butter and in with the melted cheese. I’ll keep pushing her to have the almond butter, but she’s nothing if not determined.
People often remark, when hearing about Emma’s limited food, “Well, she’ll eat if she’s hungry enough.”
While this is true, it isn’t true in the way one would suppose. Emma will say no to something and if that’s all that’s offered, she’ll wander off, seemingly not concerned. The idea that she’s really hungry doesn’t seem to cause her much anxiety. It’s as though Emma doesn’t have the basic survival instincts the rest of us come innately equipped with. I have since read on a number of websites about other children with autism who simply do not eat if the food they are comfortable with isn’t offered. Emma will eat whatever it is once, but then not again.
When Emma was a baby she appeared utterly unconcerned when one of us would leave the room. If we were at the playground she would wander off, never looking back to see where we were. It was as though the thought that she actually depended on us for survival was not programmed in. Even before she could walk, she seemed unable to comprehend that she needed us to take care of her. She behaved as though she were a fully grown, perfectly capable and independent adult. It was like that with all kinds of things. She would dash into the raging surf at the beach, as though she were a seasoned swimmer, before she knew how to swim. There were numerous occasions when Richard or I would glance up and see her disappearing into the ocean, her blonde curls floating on the water’s surface, waves crashing around her and Emma oblivious to any danger, barely able to keep her head up, laughing. It was with this same insouciance that she left our hotel room one night at around 2AM when she was three, only to be found 30 minutes later wandering the halls of an enormous hotel we were staying in for a weekend get-away. All of us were terrified and I still remember that feeling of dread, as though I might throw up, when we still hadn’t found her after the first ten minutes. The hotel was like something out of a Stephen King novel, old and creepy, with cliffs on one side dropping into an ice covered lake. The panic was all encompassing; it was as though my mind and body had separated from one another, a sensation almost every parent of a child with autism has experienced.
Last night I gave Emma a small bowl of my “Thanksgiving Soup”. She whimpered when she saw it, then dutifully tasted it, before putting the spoon down and saying, “It’s all done now.”
When I offered her another spoonful she took it, but as she held the broth in her mouth, she began to gag.
Joe who was standing nearby said, “She can take a huge spoonful of cod liver oil with no problem, but not your soup.”
Yup. That’s our girl.
For more on Emma’s journey through a childhood of autism, go to: www.Emma’s Hope Book.com
Emma's Hope Book 
I know that feeling of almost throwing up due to utter panic and fear that something has happened to Emma. She too has always acted as if my very presence is a nuisance in the form of a parental role, as if she came into the world not realizing I am her parent and she is the child, and still doesn’t. The ironic part of this independent nature is that she is also so very dependent on me. It is this massive and stratified paradox that we struggle with every day. Emma will and has rushed into water, oblivious to any danger, has crossed busy streets without a blink as the cars rushed by (or tried to I should say), has danced around int he kitchen with flames nearby on the stove with repeated warnings only to continue her waltzes as fire approaches the tips of her hair. And this lack of survival instinct seems to encompass all aspects of her life. It is what terrifies me in a constant aching manner in the pits of my soul at all times. I cannot give it much consideration, however, or I will drive myself mad. For my Emma, she does not register satiation of hunger, so she will just keep eating. I have to regulate that. I almost think she eats because of habit, or almost OCD type behavior, but not because she knows what hunger feels like. I am not sure if this makes sense, but it is how I see it. On a side note, what fish oil do you use? I have had a hard time finding one without tocopherols which come from soy.
I have also wondered about Em’s response to food. She seems to never get hungry or full. She will refuse food even if she hasn’t eaten all day, but will also eat all of a favored food until there is no more left. So if I can find the one goat’s milk yogurt she likes, she will eat every single container I buy, unless I stop her. The idea that there will not be any left for the following day eludes her.
The fish oil is Carlson’s lemon flavored cod liver oil. Here’s the link: http://www.carlsonlabs.com/p-107-cod-liver-oil-lemon-flavor.aspx
I cannot believe Em will drink it. I think it’s awful.
Interesting..While taking care of Em last winter in Aspen, I watched her carefully at the swimming pool Initially, it appeared she walked away and didn’t think about it. But I began to move out of her field of vision while still in the pool. It was a delicate, subtle dance of attention and she played it continuously. She never let me know it but I watched her look for me every 3 minutes…almost like clockwork! I timed her with the clock on the wall. Subtle but important.
She does loooove you Cloud! But yes, she has certainly gotten much better. She no longer runs headlong into the street, but waits on the curb for us. Still it is a huge difference from a neuro-typical peer. But in another few years – when she’s a teenager, her lack of interest in us will be just like her neuro-typical peers! XX