Sunday, June 27, 2010

Rainforest Cafe / an email to Maria

We had a late start this morning, partially because living in Chicago means not quite knowing what the weather is going to be, even though it's predicted. Most weather reports said it would thunderstorm today, at least by the afternoon into the evening. Um, today it was sunny and hot, not a drop from the sky during our waking hours. We thought about going to the strawberry festival but didn't want to get caught in the rain [that never happened]. Instead, we went to lunch at the Rainforest Cafe at Woodfield Mall. I have never been there, which is very surprising since it's been around for a long time. The food was overpriced but not bad; I had a Calypso chicken salad of greens, cranberries, goat cheese, a vinaigrette, strawberries and walnuts. YUM. Audrey had some cheese pizza, Ronin had nuggets as well as clean fries from the kitchen, Denis had a cobb salad, and Nikko had mac cheese but mostly ate Ronin's fries. When Nikko had the opportunity to leave the table and stand in front of a bubbly aquarium, he was doing "the Nikko dance." I recorded him on my camera and wondered if anyone watching would have thought he was dancing to the overhead music. As I watched him, I knew it was really some kind of stim because his body was jerking, his head was tilted and jerking, and he bobbed up and down to a rhythm that I couldn't predict. Do other ASD kids do this?

We walked around the mall and the boys noticed that this was the place that had the great little play area that they love to run around in. Nikko noticed that we hadn't come across it yet and started whining to get out of the stroller. I said we'd change diapers first and then go play, but Nikko wasn't thrilled with the plan. I headed toward the restrooms and Nikko was in full battle cry. I walked by a full bench of people waiting for others to come out of the restrooms and didn't look at a single person as Nikko struggled in the stroller. I wheeled into the Family Restroom and hoped Nikko wouldn't bash his head onto the stone chairs while he tantrummed. Ronin was compliant, but Nikko was a bear to change standing up. He didn't want to sit in the stroller again so I let him walk. Denis caught up with us outside the restroom and we all proceeded to the play area. The kids had fun there, of course, and I stood trying to keep an eye on my three wild little animals among the throng of kids already there. I don't think we were there more than 15-20 minutes when security came around to close the play place for vacuuming. It was difficult to get the kids out, especially Nikko. We had to finish some errands so I took Nikko into Whole Foods with me to get milk and Tofutti (fake) cream cheese for Ronin. The little kids slept in the car during this, and then all three were sleeping when I went to Meijer for some Benefiber for Nikko and other things like grapes and bananas. We chilled out the rest of the afternoon before dinner, going into the basement for a short while, and then after dinner we all took a walk around the block.

I wrote an email to Maria from MGB Services to let her know Melisa's concerns regarding Nikko crashing to the floor, as well as other behavioral red flags:

Over the past week and a half, the refusing to sit for part of the session has come up. Jenna didn’t have a problem with it one day, but did the next. It may be due in part to the current constipation problems Nikko has been having again. I had him on generic MiraLAX for a month or so, but then stopped it and started giving him a probiotic capsule and a digestive enzyme instead. The bowel movements were still harder but smaller, and he wasn't straining for the better part of a day. However, I stopped the enzyme for a few days and Nikko got extremely constipated. This was two Thursdays ago. And this past Thursday he had another bowel problem so again I had to "help" him do a #2. Now I'm exploring the Benefiber/Metamucil route because this boy is not eating enough fiber, or anything for that matter that's substantial. I'll try it for a week or two and see if it will help his bowels move along better. But back to the matter at hand, his behavior of throwing himself on to the floor is not something new to me, but is probably scary to see downstairs during ABA. Do you have any advice for Melisa on how to handle this? When it happens to me upstairs, when I am refusing him something that he wants and he throws himself on the ground, I either ignore it or redirect him after he's run out his tantrum. But I don't know what you would advise your therapists during an ABA session.

In fact, Nikko's behavior regarding being obsessed and relentless about wanting something (particularly, FOOD) is escalating. I am finding that Nikko is requesting desired foods from me (Cheese puffs, ice cream, and a high-calorie breakfast sandwich) that I don't necessarily want to give him at that time, or that frequently. I have to say no, and he is persisting, then whining/crying/screaming/flailing/swatting/throwing self on ground/kicking. I don't give in to him 99.9% of the time, but this is obviously exhausting to watch and to deal with. His reactions are similar to the relentlessness he had/has over fruit snacks, so we abolished them from the house. Does this mean I have to abolish the "new" desired foods as well? He is not accepting that he can only have them at certain times, in certain quantities and not ALL THE TIME. It is taking him a long time to get over it when I tell him "No, Nikko, I don't have any ice cream." Any advice on this?? Just stick to my guns, it's a phase that will pass *eventually*?

I have to say, the past few days have not been very pleasant ones, especially the Pirate Cove incident. I've been concerned as to how Nikko is behaving, how he is not eating even the familiar nuggets or pizza anymore, and what I should be doing about it. I really feel quite lost.

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