Autism, Uncertainty, and ROY G BIV

This evening I was walking around the house with Buddy trailing me while streaming my amazing kids music station from Pandora. I managed to create a good balance of kindie bands like Laurie Berkner and TMBG with classics such as Puff the Magic Dragon and other kids songs. At the moment, “The Rainbow Connection” was playing, and Buddy stunned me by talking about rainbows while putting his arms over his head in an arch. I wondered where he’d learned that. But what he did next really floored me.

He started listing, “Red, orange, yellow.”

Then he stopped.

I wondered if I was reading too much into it, but it seemed like too much of a coincidence that, after hearing a song about rainbows, he would start listing the colors of the rainbow in the order of the color spectrum, which is easily remembered by the acronym ROY G BIV. “What comes next?” I asked him. He stared back at me.

I went to the computer and pulled up some pictures of rainbows. “Rainbows!” he cried, and then he started listing, “Red, orange, yellow, green, blue, indigo, violet.”

The indigo is what sealed it. It’s not exactly a color I’ve been working on identifying with him. He had to have picked it up somewhere, but where?

We don’t have any books on rainbows (something I need to look into correcting), and I can’t think of rainbows featuring in anything the kids are watching. It’s possible it came up in therapy but I don’t think that rainbows have been on his curriculum.

The only thing I can think of is another song about rainbows that plays on my Pandora station, TMBG’s ROY G BIV.

What’s exciting about this to me is that it’s showing that Buddy is understanding more of the world than is apparent because of his difficulties with communication. A lot of the songs that come up on the Pandora station introduce science concepts, and I often wonder if these are things Buddy grasps, or if he just hears a string of nonsense words. Lately I’ve started reading Star Stuff to Buddy, which is a children’s biography of Carl Sagan that also introduces astronomy concepts such as what stars are. Buddy is fascinated by the book and asks to read it often, and loves the parts that talk about the stars, but I’m often left wondering if he gets that the sun is a star, and if he understands that large objects look small if you see them from far away. On the one hand, it’s a hard concept for any five year old to grasp. Heck, I’ve met plenty of adults woefully ignorant about astronomy. But since Buddy can’t really answer the questions I ask him, I have no way of gauging what he understands and what he doesn’t understand. For now I just have to be content with the fact that we like reading about the stars and Carl Sagan together.

There’s a lot of evidence that there are many different genetic disorders that fall under the category of autism, which is why you see so much variation between children with autism and their prognosis. In the future, if you find which genetic variant of autism a child has, you could get a ton of information on when they will hit certain developmental milestones and where they will be when they become adults. However, since this research is in it’s infancy, it’s not yet possible to get Buddy tested genetically and see which type of autism he has and get a feel for his developmental timeline and where he could end up. Any data we collect on him would go into basic research and would help advance knowledge, and if we’re lucky we could meet up with other families who have a child with the same type of autism, but Buddy might be the first identified case (I haven’t got him tested yet, but it’s on the list of things to do).

When you have a typically developing child you have a general idea of when they will meet certain milestones. They start talking at this age, they start using sentences at this age, expect to see this at the age, etc. With autism, you don’t have that. Generally development does happen in unpredictable bursts and spouts that can slide backwards before making a giant leap forwards. And you don’t know where the end point is. At 18 you could have a newly minted adult who is ready for the challenges of college and independent living, or you could have a newly minted adult who will not be able to live on his own. Experts who work with Buddy are generally optimistic about his prognosis, but as Andy and I struggle to pay for therapy while trying to set aside something for college, we sometimes wonder if we’re going to be left feeling foolish when Buddy turns 18 and we find we put away a lot of money in a college savings account for someone who can’t handle the rigors of college.

Lately I’ve been encouraged because Buddy has finally started consistently communicating back and forth. At the beginning of the month, he finally started answering his name if we asked, “What’s your name?” rather than repeating, “name.” One morning I came into his room and wished him a good morning. “How are you?” he asked. “I’m fine, how are you?” “I’m doing good!” he replied.

Most five year olds can do it, but it was the first time Buddy ever did.

But just as I relish these milestones, there’s still a long way to go to discussing abstract concepts and having indepth conversations. That little morning exchange is about as complex as we can get right now. Five tends to be a critical time period for children with autism. Some experience rapid language development and even “catch up” to typically developing children. Naturally, the prognosis for children who experience this is better than for those who don’t. Sometimes I wonder if we’re on the cusp of that, and then sometimes I despair that we’ll reach a plateau, or that when he turns six in November he’ll have made so much progress, but still be leagues behind where typically developing children are and he’ll never close the gap.

And I just wish I had the peace of mind of knowing which one it would be so I could prepare. But I don’t.

This week after I picked him up from therapy and was loading the kids into the van, Sissy found one of Buddy’s favorite toy train engines, and of course, she wanted to play with it. I could see Buddy struggle with desperately wanting his favorite train back, but as soon as he reached for it I asked him what would be the nice thing to do. He understood me and did not take it from her, but instead found a bucket of toys Sissy had loaded and taken with her and grabbed Sissy’s Minnie Mouse doll and gave it to her and asked for his train. I was impressed with this demonstration of new found negotiation skills. Usually he just takes what he wants from Sissy. But it also goes back to showing a child who understands more than he can communicate.

Which brings us back to ROY G BIV and Buddy seeming to understand the colors that make up the rainbow just from listening to the songs on my Pandora station. And it seems more and more likely that reading books about such abstract concepts as stars and galaxies is not merely a good bonding time activity with him, but something that he is understanding at a deeper level than he can communicate.



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